Artykuły w czasopismach na temat „Career choices for hearing impaired”

Vocational education is an important stage of one’s educational process and this multi-layered process prepares an individual to his/her future profession. It is underlined that in this process, a hearing-impaired individual has problems to plan and manage his/her career, due to many reasons, like; communication difficulties in workplaces and lack of recognition about hearing-impaired as a category of disability in work environments. Internship is one of the important opportunities to acquainted with profession and its effective use in vocational education of hearing-impaired students is significant. In this study, internship is handled as an integrated process which covers before, during, and after activities as a whole. The research aims at effective use of internship in familiarizing process of hearing-impaired senior students of Anadolu University, School for the Handicapped (SFH) with work places. The research was conducted as action research. For efficient use of internship process in SFH, some steps were defined targeting before, during and after periods of internship and various sub-activities were planned and applied for strengthening each step and for effective contribution of internship experience to vocational education. The research indicated that through the activities, performed in internship process, hearing-impaired students improved their career perceptions and they had attempt to recognise work environments. The research results are expected to provide a new perspective to teachers of hearing-impaired students and consultants, who is working for the formation of vocational education programs of hearing-impaired. And also it is thought that the results will provide huge motivation to hearing-impaired students in familiarizing process with profession. Keywords: Hearing Impaired, action research, vocational education, special education, career planning.

From the change of adult unilateral cochlear implantation into young children even under the age of six implant cochlear, sequential bilateral cochlear implantation, which benefit by early hearing screening and technological development of cochlear implants. It is a worldwide trend that simultaneous bilateral cochlear implantation for hearing impaired children under the age of three. Cochlear implants bring changes of education opportunities and choices for children with hearing impairment. Family-centered postoperative early intervention is important, at the same time, hearing impaired children group characteristics tend to be diversified. A growing number of children with cochlear implants study in regular school, consequently, the number of deaf student is decreasing in deaf school. Regular school faces the challenge of lacking of professional teaching staff.

Being cohesive in writing for the hearing-impaired students is very crucial, serving as an alternative means of expressing ideas without using sign language in communicating with people in general. This study aims to analyze the textual structure of the hearing-impaired students’ recount texts to instantiate how they structure language in communication. This study focused on investigating the choice of theme and thematic progression patterns as an instantiation of making meanings among the hearing-impaired students as a minority group of students with special needs. The data were 36 recount texts of high and low achiever students collected from three educational levels: elementary, junior high, and senior high schools. Following a qualitative approach to data collection and analysis, this study relied on Systemic Functional Linguistics as the main conceptual framework for investigating types of theme and thematic progression patterns, and how these two elements showed the features of writing to mean among the hearing-impaired students. In terms of theme choices, the findings indicate that low achiever hearing-impaired students employed more marked themes with a lack of ability in writing to mean. In terms of thematic progression, theme reiteration pattern was the most frequently employed pattern, indicating a strong intention to the topic. The study informs that the textual description of the hearing-impaired students’ writings could help the teachers understand what and how to teach to improve their writing to mean.

Hearing parents of young children newly diagnosed with a hearing loss typically know little of this condition or how it can best be managed. Information and assistance is available through early intervention programs. However, these take a variety of forms and offer different, sometimes conflicting, philosophies. The selection of an early intervention program is an important choice and one which requires parents to collect and assimilate large amounts of information and opinion. This must be done during what is, for most, a highly traumatic period. It is generally accepted that parents should make the major choices for themselves and their children, rather than have them made for them by experts, but that this should be done in a collaborative manner. This requires that the relevant experts are able and willing to provide information and advice which is balanced, comprehensible, and appropriate to the needs and abilities of the parents - that is, information and advice which is helpful. This study surveyed parents who had been through the early intervention process to identify the sources from which they obtained their information, and their perceptions of the helpfulness of the information provided.

Many visually handicapped students’ misconceptions and misinformation about jobs may result in disappointment when their idealized career images cannot be actualized. Professionals in the field, then, must seek to provide these youth with opportunities for examining a variety of occupations in an effective, but non-threatening manner. The project described in this article was one teacher's innovative attempt to involve ten visually impaired youth, enrolled in a public day school, in an activity which would assist them in making realistic career choices.

ObjectivesEndometriosis is a gynaecological disease most commonly causing severe and chronic pelvic pain as well as an impaired quality of life. The aim of this study was to investigate if and how endometriosis affects choices regarding professional life as well as the quality of daily working life.Design, setting and participantsIn the context of a multicentre case–control study, we collected data from 505 women with surgically/histologically confirmed diagnosis of endometriosis and 505 matched controls. Study participants were recruited prospectively in hospitals and doctors’ practices in Switzerland, Germany and Austria. Using a detailed questionnaire, the study investigated work–life and career choices of study participants.Main outcome measuresAssociations between endometriosis/disease symptoms and limitations in career development as well as ability to work.ResultsWomen with endometriosis were less often able to work in their desired profession than women from the control group (adjusted OR=1.84, 95% CI: 1.15 to 2.94, R2=0.029, p=0.001) and they had to take health-related limitations into consideration in their career decisions to a significantly higher degree than women in the control group (OR=4.79, 95% CI: 2.30 to 9.96, R2=0.063, p<0.001). Among women with endometriosis, chronic pain was significantly associated with increased sick leave (OR=3.52, 95% CI: 2.02 to 6.13, R2=0.072, p<0.001) as well as with loss of productivity at work (OR=3.08, 95% CI: 2.11 to 4.50, R2=0.087, p<0.001).ConclusionsEndometriosis is associated with impairment of professional life, in particular with regard to career choices. Further research to develop strategies to support endometriosis-affected women in realising professional opportunities is recommended.Trial registration numberNCT02511626; Pre-results.

Real-time spectrographic displays (SDs) have been used in speech training for more than 30 years with adults and children who have severe and profound hearing impairments. Despite positive outcomes from treatment studies, concerns remain that the complex and abstract nature of spectrograms may make these speech training aids unsuitable for use with children. This investigation examined how well children with normal hearing sensitivity and children with impaired hearing can recognize spectrographic cues for vowels and consonants, and the ages at which these visual cues are distinguished. Sixty children (30 with normal hearing sensitivity, 30 with hearing impairments) in 3 age groups (6–7, 8–9, and 10–11 years) were familiarized with the spectrographic characteristics of selected vowels and consonants. The children were then tested on their ability to select a match for a model spectrogram from among 3 choices. Overall scores indicated that spectrographic cues were recognized with greater-than-chance accuracy by all age groups. Formant contrasts were recognized with greater accuracy than consonant manner contrasts. Children with normal hearing sensitivity and those with hearing impairment performed equally well.

Recently, there is a growing trend to investigate wide dynamic range compression technique with the development of hearing aids. However, existing methods used to enhance expected speech as well as the background noise and classical linear compression can’t achieve the requirements of hearing impaired individuals’ reaction to the loudness compensation flexibly. To cope with the problems, this paper proposes a new approach to suppress the enhanced background noise and to dismiss abnormal sound caused by severe jittering from high frequency signal. What’s more, a scheme of curve compression is introduced to improve the loudness amplifying flexibility instead of conventional linear compression. Both the theoretical simulation and testing on cellphone hearing aid APP based on android system prove the proposed method can improve the performance of speech enhancement and provide more choices to strength sound with the curve compression ratio.

PurposeIndependent practice (IP) may be important for the financial stability and autonomy of audiology. The authors sought to identify variables that affect doctor of audiology (AuD) students' decisions to enter IP or another practice setting.MethodThe authors sent a survey link electronically to 1,430 members of the Student Academy of Audiology; 300 returned completed surveys.ResultsNearly 24% of AuD student participants plan to choose IP immediately upon graduation. Men were more likely than women to choose IP as were those who had an IP rotation and were in the 3rd or 4th year of their AuD program. Important predictors included the survey items “job satisfaction among IP practitioners” and “attractiveness of other specialties”; the “patient contact” perception factor; the “overall job satisfaction” influence factor; and the student age (over 30) demographic variable.ConclusionsIt appears likely that audiology IP rates will remain steady at levels that lag behind the IP rates of other doctoring professions. The authors report some of the variables that appear to have driven current AuD students' career setting choices regarding IP.

AbstractClinicians must often contend with ethical issues that arise during rehabilitation. When a patient has right hemisphere damage (RHD), these concerns may be exacerbated because of the presence of cognitive deficits. In this article, we focus on the ethical principle of respect for autonomy, which raises issues relevant to patients with RHD who have impaired executive control functions. Respect for autonomy involves respecting others in terms of their decision-making and subsequent actions. Disagreements may occur between members of the rehabilitation team, the patient, and family about the decisions that the patient makes. Clinicians may have concerns about the patient's capacity to make informed decisions. Indeed, in some cases, because the patient is “talking,” the verbal skills may mask the impairments in underlying cognitive processes. We provide two case examples of patients with RHD with sufficient language skills to express their choices, but cognitive deficits that affect their decision-making abilities. We use a clinical decision-making model adapted from Jonsen et al to discuss the cases. In both cases, the rehabilitation team strives to balance what they deem to be in the best interest of the patient while continuing to respect the patient's autonomy.

Abstract Previous research has established the role of lifelong learning in promoting psychological wellbeing and active aging. Population aging necessitates an understanding of the unique opportunities and challenges around formal and informal learning in later life. This paper will share findings from a mixed methods study with the MIT AgeLab 85+ Lifestyle Leaders, a panel comprised of octogenarians and nonagenarians from across the United States. Drawing on an online survey and virtual focus groups with 29 Lifestyle Leaders from January 2021, findings suggest the Lifestyle Leaders most often learned new things from talking with others (46%) and reading print (54%) or online (54%) sources. The majority were familiar with attending in-person lectures or classes (89.7%) and were now using videoconferencing to do these (78.6%). A majority (56.7%) had or are currently participating in a lifelong learning program. Most consider themselves lifelong learners and described this around remaining curious and engaged with life, choices around what one learns, and greater enjoyment of learning. In the survey, a plurality of Lifestyle Leaders indicated the top two challenges affecting their ability to learn were sensory burdens (e.g., hearing loss, declining eyesight) (35%) and their energy level (32.4%); focus group data revealed that recall also is a barrier. Focus group data further highlighted generational experiences around early life learning and career paths, specifically how gender roles, diagnoses of learning disabilities, and evolving digital technology have affected these and changed over the course of their lifetimes.

Abstract Previous research has established the role of lifelong learning in promoting psychological wellbeing and active aging. Population aging necessitates an understanding of the unique opportunities and challenges around formal and informal learning in later life. This paper will share findings from a mixed methods study with the MIT AgeLab 85+ Lifestyle Leaders, a panel comprised of octogenarians and nonagenarians from across the United States. Drawing on an online survey and virtual focus groups with 29 Lifestyle Leaders from January 2021, findings suggest the Lifestyle Leaders most often learned new things from talking with others (46%) and reading print (54%) or online (54%) sources. The majority were familiar with attending in-person lectures or classes (89.7%) and were now using videoconferencing to do these (78.6%). A majority (56.7%) had or are currently participating in a lifelong learning program. Most consider themselves lifelong learners and described this around remaining curious and engaged with life, choices around what one learns, and greater enjoyment of learning. In the survey, a plurality of Lifestyle Leaders indicated the top two challenges affecting their ability to learn were sensory burdens (e.g., hearing loss, declining eyesight) (35%) and their energy level (32.4%); focus group data revealed that recall also is a barrier. Focus group data further highlighted generational experiences around early life learning and career paths, specifically how gender roles, diagnoses of learning disabilities, and evolving digital technology have affected these and changed over the course of their lifetimes.

“Please do a good job, let’s continue our mission, and God will take care of us” are some of the words that he has engraved in the hearts of those he has met. He was a mentor to everyone he encountered, known for giving the best words-to-live-by. He was always ready to share his time and his knowledge, some of which were his best qualities. It was a great honor for everyone to be around Dr. Jose Abano, the Father of Hearing Care in the Philippines. Generous, kind, humble, witty, and wise are just some of the descriptions his family and friends shared about him. He was someone that everyone loved to be around at parties, at home, and even at his workplace. With his broad knowledge born out of years of experience, he left everyone in awe of who he is today. His character was founded on his mission for the hearing- impaired, making him extremely memorable to many. His reputable knowledge and skills also started from his prestigious experience. He graduated from the University of Santo Tomas College of Medicine and Surgery in 1965. He then took his Otolaryngology Residency Training at the Department of Otolaryngology, Long Island Jewish Medical Center in New York from 1969 to 1973. This is where he saw how advanced the technology was abroad and wanted to bring this to his home country. As a visionary, together with his wife, Mrs. Mabel Abaño, they wanted to serve the hearing-impaired population in the most professional way possible. Soon, this became the reason he was awarded the title of the Father of Hearing Care in the Philippines. In 1976, Manila Hearing Aid was established–his pride and joy. The first clinic at Quezon Boulevard was a facility for ear and hearing diagnostics, as well as equipment calibration. Over more than 45 years, the humble clinic has multiplied to different areas nationwide to help more and more hearing-impaired Filipinos. Dr. Jose Abaño’s mission has continuously been passed on not only to his children but also to his employees. He was a mentor from whom one would learn great things in a conversation, as he shared his inexplicable wit that made up his interesting storytelling. Not only was he loved for this trait as a mentor, but it came along with his modesty as an individual, regardless of how accomplished he was. Outside all his career achievements, he was actually a magician. Why a magician? He would joke that if he wasn’t a doctor, he would be one. Jokes like this were very endearing to our family and friends. He said this because it was like magic that he was able to marry someone like Mommy Mabel Abaño, the love of his life. Little did he know, he really was a magician, someone who brings magic to people’s lives. In parties, he was very accommodating where he would share his plate of jamon and select wine sharing his humor around. He made sure everyone was served and would engage himself in conversations to make people feel included. His presence was sometimes quiet but exuded so much joy and energy. He was a protective family-man, being proud of all his children, and doing simple wholesome acts like locking the doors at his home to ensure the safety of his family. As a husband, when he and Mommy Mabel were far away from each other due to travel, there was not any day that would go by where they would not check on each other, a love that was pure and whole. It was truly an honor to have Dr. Jose Abaño, Dad, friend, husband, in our lives. In his final months, something never changed, he was still deeply loved. His nurses were very fond of him, they loved taking care of him because of his endearing presence. During the last weeks when he was already unable to communicate, he would make sure to make his children feel that our presence was acknowledged, with the simple raising of his eyebrows. It was a simple gesture, but it still showed that he was a fighter. He endured all the pain and kept fighting. In the end, it is a supposition that he loved mommy so much that he needed to go with her and go back to our Creator. All his life, he was well-loved as a husband, father, friend, relative, and founder of his great mission – his light always has and always will live in the hearts of those who were served by his mission and are still being served by it. It is safe to say, his legacy will live forever.

The Bangor Gambling Task (BGT, Bowman & Turnbull, 2004) is a simple test of emotion-based decision making, with contingencies varying across five blocks of 20 trials. This is the first study to characterise BGT performance in survivors of traumatic brain injury (TBI) relative to healthy controls. The study also aimed to explore sub-groups (cluster analysis), and identify predictors of task performance (multiple regression). Thirty survivors of TBI and thirty-nine controls completed the BGT and measures of processing speed, pre-morbid IQ, working memory, and executive function. Results showed that survivors of TBI made more gamble choices than controls (total BGT score), although the groups did not significantly differ when using a cut-off score for ‘impaired’ performance. Unexpectedly, the groups did not significantly differ in their performance across the blocks; however, the cluster analysis revealed three subgroups (with survivors of TBI and controls represented in each cluster). Findings also indicated that only age and group were significant predictors of overall BGT performance. In conclusion, the study findings are consistent with an individual difference account of emotion-based decision making, and a number of issues need to be addressed prior to recommending the clinical use of the BGT.

Introduction Sickle cell anemia (SCA) is caused by the homozygous inheritance of the βS allele (HbSS). SCA's destructive pathogenesis drives a state of continual oxidative stress and vascular inflammation due to accelerated auto-oxidation, iron de-compartmentalization, and inflammatory cell-derived oxidants. Continuous oxidative stress and vascular inflammation bolsters vaso-occlusion and ischemia-reperfusion cycling, impacting the functionality of multiple organ systems. The auditory system is particularly vulnerable to vaso-occlusive events as an end organ system. Repetitive damage secondary to recurrent SCA crises presents phenotypically as sensorineural hearing loss (SNHL), negatively impacting many children and adults living with SCA. A SCA crisis leads to stasis of the labyrinthine artery which supplies the inner ear, leading to hypoxia of the Organ of Corti and the Stria Vascularis within the cochlea and causing death of outer hair cells--important for amplification of sound. This results in permanent inner ear damage and hearing loss. Hearing loss in children has a documented negative effect on academic performance, speech and language development as well as self-image. For adults, hearing loss can have significant impact on career choices and effective communication in the workplace. Previous studies estimating the rate of SNHL in SCA suffer from significant design flaws, making broad application difficult. The major design flaws were: 1) no matched control population, 2) varying definitions of what qualifies as SNHL, and 3) absence of defined demographics within SCA and control groups. To address these flaws, a strict meta-analysis of the literature was performed comparing the prevalence of hearing loss in SCA and the general population. Methods & Results A comprehensive-- SCOPUS, PubMed, Google Scholar, and Medline--literature search was conducted to identify the prevalence of SCA pediatric SNHL, published between January 1970 and December 2018. Data was extracted by two reviewers per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, whereby there was no blinding to authors, journals of publication, or the results of the studies. Conference abstracts, posters, and single patient case reports were not excluded. Inclusion criteria included studies that examined exclusively SCA populations and rate of SNHL with a clearly defined threshold for hearing loss. Additionally, papers needed to include distinctly defined age ranges and a non-SCA control population. The initial search yielded 49 studies, with 21 studies meeting the inclusion criteria. Of the 21 studies identified, only 6 exclusively examined pediatric patients while the remaining were mixed adult/pediatric studies. To perform the analysis, we conducted a random effect (DerSimonian-Laird) meta-analysis. A Haldane-Anscombe correction was used to account for cases of no hearing loss within certain groups with small samples. The log odds ratio (LogOR) for SNHL in the mixed adult/pediatric population was 1.9 (95% CI 1.33 - 2.4) and the LogOR for SNHL in the pediatric only population was 1.4 (95% CI 0.781 - 2.1). These results indicate a strong association between SNHL and SCA in the adult and pediatric population. Conclusions SNHL among children can have deleterious impacts on their development, this meta-analysis showed a significant association between SCA and the development SNHL. The stronger association between SNHL in AN adult population compared to A pediatric population showed that there is worsening of SNHL over time secondary to SCA. At present, the data implies there should be an increase in audiological testing and screening in all patients diagnosed with SCA. (add in all forms of SCD) Clinical care providers should also make themselves aware of this under-reported and severe pathology in their patient population. The research community must also make efforts to standardize their approaches to measuring and observing this phenomenon to make certain that all future studies are clinically applicable and translatable. Figure Disclosures Vercellotti: Mitobridge, an Astellas Company: Consultancy, Research Funding.

Objective: Hearing Impaired students studying in the institutes of the special education Department Punjab at secondary to higher secondary level face problems regarding making choices of which field to choose or which area of work would be suitable to them. Among many issues which hinder students in making these decisions, social identity issues are the prime factor. The problem under research here relates to the sub-theories of social identity theory, namely, social influence, group norms, self enhancement, uncertainty reduction and motivation. Methodology: Population of the study was children with hearing impairment at higher secondary level in special education institutes. Sample of 100 hearing impaired students was taken randomly from the Govt Special Education Institutes of Punjab of which 59 were male and 41 were females. Findings: Social identity in terms of linguistic differences of the bilingual deaf culture arising in the institutes of Punjab is important and ignored factor. Implications: Study is useful for teachers and parents to resolve the linguistic problems in students with hearing impairment. Moreover, other organizations can formulate a strategy to address issues related to career counseling and government can work on standardization and recognition of Sign language in Pakistan as a unique and independent language.

With the continuous development of the career of the disabled, special education has become an important part of the development of education in China. Therefore, it is particularly important to meet the needs of special children’s campus construction. However, China is relatively backward, and special education schools lack complete landscape design for special groups. Campus landscape carries many contents including education, leisure, communication and rehabilitation. At present, the landscape design of special education schools lacks the recognition of the particularity of special children, and ignores their demands for normal communication and interaction. Starting from the characteristics of special children, this paper analyses and studies the perceptual characteristics of hearing impaired students and visual impaired students respectively, and applies the concept of “interactive design” to the landscape design of special schools. Interaction design pays attention to the process of human experience, which coincides with the design idea of “people-oriented” emphasized in landscape design. Landscape interaction design is the design of human communication, communication and interaction space, so as to guide the campus landscape environment suitable for the barrier-free interaction of actors, make up for defects, provide safe activities, individualized education and living campus.

It was no less than a minister in the Hawke Government who called me the worst thing I have ever been called. Of course he meant well, and he knew no better than what his advisors told him and what his speechwriters wrote. He was opening a new business incubator, where my business partner who was also deaf and I had set up our small business in editing and graphic design, and I was startled when in his speech he described us as two “hearing-impaired businessmen”. I visualised myself in some parallel universe where I was a “hearing-impaired businessman”. I could see an anxious, portly man, clad in a rumpled dark beige suit, a blue business shirt with some faded soup stains, a dark blue tie askew, and flat, sensible lace-up business shoes. This man would just tolerate the “hearing-impaired” moniker because it was endearingly different in a line of work that was often about being different, provided no-one made a song-and-dance about it. “Hearing impairment” would be his cross to bear. He would regard success as the measure of how many clients would not know he was deaf. And for those let in on the secret, exclamations of “I had no idea” would be sweet music to what was left of his ears. Having a Minister of the Crown refer to it at a public gathering would be like taking medicine – unpleasant but probably doing him good in ways he could not understand. This happened more than 20 years ago, and the fact I remember it well revealed the impression it made on me. I had thought to myself, was ‘hearing’ an adjective? Was the minister referring to businessmen whose hearing was impaired? Or was he referring to the act of hearing the noises made by businessmen who in some way were damaged or defective? Of course he meant the former, but it brought home to me how much the idea of being damaged was embedded in “hearing-impaired”. And with complete clarity, I knew this phrase did not describe me – I was not damaged in that way. My discomfort at that briefest of disclosures was a critical landmark on that most personal of journeys: to find out one’s place in the world. While I knew I was many things, for example a dad, a partner, a writer, I could never leave out the Deaf side of me. It was a journey of terminology, but the choices of many contentious words revealed much about my own exploration of what it meant to be deaf. It began soon after I acquired a hearing aid. I was six years old when a silver boxy thing, about the size of a packet of 25 cigarettes, was hitched onto my singlet under my shirt. There was a flesh-coloured cord that looped out from the collar into my ear. In spite of this device, I decided that I was not deaf. In medical terms of course I was: severe to profound bilateral sensori-neural deafness across the speech frequency ranges was the audiologists’ fancy way of saying I could not hear people when they spoke to me. And it was not myself, either; deafness affected two of my three sisters, and my brother. But I was not deaf – that was very clear to me. The word deaf was not uttered in the family home. The code words my mother used were the hearing. She would put it in a context like this: I was down the street and I met Mrs Schneider, and talking to her, she was very interested in the hearing with your family. Much later I asked my mother about this word deaf. She said it was associated with the word dumb. That was not at all surprising. In her time, deaf went with dumb the way bread went with butter. In her mind, deaf and dumb were complementary, and she never really shook off that association. A century ago Deaf people who signed and did not speak, freely acknowledged a mute side of deafness, and even referred to themselves as “doubly afflicted”. If I was not deaf, then what was I? Not being able to answer that question to my satisfaction eventually led to a fling with calling myself “hard of hearing”, But for me, “hard of hearing” became linked with decrepit, bumbling elderly citizens cupping an ear and barking “Whazat? Wha? Wha? Whazat?” This was an unfair stereotype. Such people, who were not at all bumbling types, were my first introduction to deaf people outside the family home. They gathered at the place my sisters and I attended to learn to lipread, at what was then the Australian Association for Better Hearing, and they all used the term “hard of hearing”. I was eight years old, and at that age, adults were impossibly ancient. From that perspective, “hard of hearing” people were very old, slightly stupid and faintly smelly. “Partially deaf” seemed better. This was an each-way bet. It covered those times when I was not deaf, such as when I was with my family, and the times when I was, such as at school. Not once did it occur to me that I might be “partially hearing”. In its own way, “partially deaf”, with its qualified mention of the d-word, captured a growing sense of deafness of the pre-adolescent teenager I was. The expression “oral deaf”, had a briefer vogue. This term recognised I was deaf but in a different kind of way from those whom I dimly perceived at the time were the real Deaf people. These people were defined as being unable to do things I could do, such as speak in a normal voice and carry on a phone conversation of sorts. But they could also do something I could not – communicate fluently in sign language. Whereas “hard-of-hearing” was a subspecies of hearing, oral deaf was a subspecies of deaf, not of hearing, so it had a point. It was at this time the group of young deaf people with whom I associated decided to produce a car-bumper sticker as part of a publicity drive. We rejected Deaf people do it orally, and soon, Deaf people do it with perception graced the rear window of my Torana. I was proud of this slogan, even if took considerable explaining to baffled enquirers. But it was a rare and early indication that there just might be something positive about being deaf. I soon realised that the word “oral” had considerable historical baggage. Dictionaries define oralism as the belief that deaf people should communicate by speech and lipreading, and without sign language. At the time I did not know why there was such a controversy around it, nor could I fathom why most of those in my growing circle of deaf friends did not understand it, or worse, did not want to talk about it. The penultimate term with which I flirted was the commonly used “hearing impaired”. At least from a disability perspective, there are people who are vision impaired and speech impaired. Like “hard-of-hearing”, hearing impaired” hitched such people firmly to the hearing wagon. For many people who acquired deafness gradually, it was palatable. I have settled quite happily on the term “Deaf”. Its capital D is important, but I do not insist on it for myself. After all these decades it is the only term that makes profound sense. In the company of good and aware people, I might suppress an impairment of hearing, but I do not suffer from Deafness; I merely am Deaf. I might overcome hearing impairment, but I can no more overcome being Deaf than I could overcome my elbow or my shoulder or the fact that I am compelled to write. For me, Deafness is a variation on the human condition, an example of the vast diversity of humans, like left-handedness or ethnicity or sexual orientation. No longer do I think in terms of a hearing loss; Deafness gain is what happened to me. There are several things I have learnt from this journey. First, no matter what terminology you feel happiest with, and which you feel suits you best, someone is going to tell you that you are wrong. He or she will insist, with a shrill note of finality, that you are not X, you are Y. That someone is unlikely to be another Deaf person. He or she is more likely to be hearing, or a hearing-impaired person, or a hearing parent. Second, dominating discussions of a Deaf identity are hearing people who never face the question in the same deeply personal way as Deaf and hearing-impaired people themselves. Third, discussion on a Deaf identity is plagued by stereotyping of what deaf people are not supposed to be able to do. For hearing people, what you cannot hear is what defines deafness. Chief among these is an inability to ever hear music. I can only say that music – listening to it, dancing to it, and yes, playing it – has been a normal part of my decades of being a part of the manifold shapes and colours of gatherings of Deaf and hearing-impaired people. It is easy to see this when reading popular accounts of deafness. Hearing-impaired people outnumber Deaf people by a factor of several hundreds. By sheer weight of numbers these accounts reflect themes of silence, conquering, overcoming, and triumph. Overcoming what, precisely? Silence. Such writers talk of deafness when they really mean the impairment of the hearing, because their aim is to be hearing again. And why not? Whether such accounts of hearing impairment have gotten away from this triumphalist approach, I am not sure, but I do know I could not bear to wade through more descriptions of the joy of sound. Thus we have the patter of rain on the roof, the silvery peals of children’s laughter, the waves lapping on the shore, and so on. Of course, each of the senses has a pleasurable aspect to it. One of the memorable scents that I know of is the smell of the earth after a burst of rain following a hot dry spell. But I also remember the revolting stench of a public toilet attached to a remote petrol station and bus stop in the desert of a third world country. All the senses have unpleasant aspects as well. So when I read a long list of pleasurable sounds, their imagined absence that are considered a reason for regarding deaf people as sad and pitiable, I’m reminded of the Monty Python parody of a well known hymn: All things dull and ugly, all creatures short and squat.All things rude and nasty, the Lord God made the lot And so it is with sound. No-one singing the praises of hearing ever refers to the hideous clogged-mucous growling of semi-trailers and their shrieking air brakes, or to the piercing skritter of fingernails scraped down plasterboard, or to any song by Barry Manilow. My sense of deafness as a part of who I am comes from a life-long exploration of deafness, exactly what that poor hearing-impaired businessman will never do. He could not because his narrow definition of deafness, a pallid imitation of what hearing people think it is, blind him to the rich possibilities of what Deafness can be. That gentleman’s life would have been dominated by tension as he negotiated transactions with hearing people. Such tension is universal with any Deaf or hearing-impaired person. Where Deaf people are concerned, the similarity ends because they draw a sustenance that comes from knowing the place of Deafness within oneself, and especially, from the ease of communication with other Deaf people. This businessman would know nothing about that. I think he would be a very lonely man, and devoid of any sense of humour. My exploration of Deafness, which will continue for as long as I live, was inextricably bound up with an exploration of who I was and what was my place in the world, because personal identity is fluid and changing, and has many facets. Deafness is one part of me, but it is not the only part.

Gender stereotypes are ubiquitous and often have negative consequences. However, they are common in children’s media, toys, and stories. Awareness of these gender stereotypes can hugely influence children’s perception of gender roles. Further, family-related factors, such as familial makeup, parenting, and siblings order, may be crucial in children’s acquisition of gender knowledge, which may later affect children’s wellbeing, career aspirations, peer choices, and academic performance. In order to better understand factors influencing children’s perception of gender roles and what psychological impacts they have, we integrated findings across the fields of sociology and psychology. We reviewed literature on the roles of the media, family, toys, and stories in shaping children’s perception of gender roles across sociological and psychological journals. We only included papers discussing factors and impacts on children aged two to fourteen. The findings from this review indicate that children’s media, toys, and stories commonly portray a disproportionate distribution and stereotypical gender representation of male and female characters. Besides, familial factors can influence children’s perception of gender roles and gender flexibility. Findings underline harmful impacts gender stereotypes may have on children, ranging from mental health problems like depression, anxiety, and somatic complaints to bullying, problematic peer relations, impaired academic performance, and school misconduct. Given the prevalence of gender-stereotypical ideas embedded in parenting and children’s media, toys, and literature and their negative impacts, we should be working to reduce the adverse impact of these stereotypes on children.

Introduction: How Do We Learn What We Know? “Deaf.” How do we learn what we know about being deaf and about deafness? What’s the difference between “being deaf” and “deafness” as a particular kind of (non) hearing? Which would you rather be, deaf or blind: children commonly ask this question as they make their early forays into imagining the lives of people different from them. Hearing people cannot know what it is like to be deaf, just as deaf people cannot know what it is like to hear ... or can they? Finally, how can we tell fresh and authentic stories of “being deaf” and the state of “deafness” that disrupt our familiar—perhaps even caricatured—patterns of understanding? In this special “deaf” edition of M/C Journal we wanted to create a body of work in which deaf writers and thinkers would have their say. Mindful that "Deaf history may be characterized as a struggle for Deaf individuals to 'speak' for themselves rather than to be spoken about in medical and educational discourses" (Bauman 47), we were particularly keen to place the contributions of deaf writers and thinkers alongside the mainstream hearing culture. This is why we have chosen not to identify each writer in this edition as deaf or hearing, preferring to leave that biographical auditory detail to the writers themselves. We already knew that "there isn't a large body of literature about the deaf by the deaf" (Henry Kisor 3). Thomas Couser writes that "this should not be surprising, for a number of factors militate against deaf autobiography ... making them unlikely and rare entities" (226). And so we welcomed the diversity of topics and range of genres to this edition: they included a playful ficto-critical exploration of deafness; personal reflections on deafness (ranging from regarding it as a condition of hearing loss to a state of being); poetry; a filmography; and several fresh analyses of representations of deafness, hearing technology and deaf people’s lives in theatre, film and television (this was a particularly popular theme); the poetics of embodiment (indeed, embodiment was a recurring theme across many of the submissions); a commentary on the role of interpreters in deaf-hearing relationships; and an analysis of the role of the Web 2.0 and other technology in deaf people’s communications. However, we noted that most of the uncommissioned submissions in response to our call for papers came from hearing people. We had to seek out contributions from deaf writers and thinkers and wondered why this was so. Mainstream publication avenues for writing by deaf people on the topic of deafness are rare in Australia: perhaps deaf writers lack the necessary confidence or belief that they would be read? In this edition, they certainly reveal that they have much to say ... and inspire us to lean in and think carefully about their words. A Deaf Knowingness In writing her poem “The Triton”, Sandra Hoopman was inspired by her frequent visits to her deaf grandmother at her old Lambert Street, Kangaroo Point home, where she had a huge triton on her wrought iron veranda. Her grandmother would put the triton up to her ear and show Sandra how to 'listen' to it so that she could ‘hear’ the sea. Her poetry recalls to mind Robert Panara's most-quoted poem, “On His Deafness”, in which he imagined that he might even hear 'the rustle of a star!' Following Sandra Hoopman’s poem, we are pleased to feature the essay “Body Language” by Jessica White, shortlisted for the ABR 2010 Calibre Prize, and Sydney Morning Herald Best Young Novelist for 2008 for her first novel A Curious Intimacy (Penguin 2008). In her essay, Jessica playfully explores the idea of not having a singular fixed identity by traversing a dialogue between the imagination and the character of Jessica, showing different selves at play and in conversation, and again in conversation with others at the ficto-critical room and with the ideas articulated by different authors. As with post-structuralist explorations, the essay emphasises the active and formative nature of language, story and ideas, which help us to deconstruct and reformulate versions of our lives and its possibilities. Play is a device that enables people to move beyond the confines of the social world. The joyful spirit of White’s essay is signalled when she writes: For example, there are still immense possibilities thrown up by theorising a jouissance, or pleasure, in the disabled body. As Susan Wendell points out, “paraplegics and quadriplegics have revolutionary things to teach us about the possibilities of sexuality which contradict patriarchal culture’s obsessions with the genitals” (120). Thus if there were more of a focus on the positive aspects of disability and on promoting the understanding that disability is not about lack, people could see how it fosters creativity and imagination. White’s essay is a ‘picaresque’, following a traveller who narrates her adventures and encounters. It is a wonderful model for narratives of difference as it departs, refreshingly, from mainstream Hollywood-style plot conventions, i.e of progress through conflict towards a climax and resolution. Instead, the picaresque allows for a variety of roles, settings and pathways for the wanderer, multiple characters and illuminating dialogues. It demonstrates literally as well as figuratively, productive encounters with the Other, jolting us into new understandings, ways of knowing and possibilities of being. In this way, White’s essay “Body Language” sets a thematically rich tone for this special “deaf” issue of M/C Journal. Through her essay and the following narratives, commentaries, articles and essays, we are immersed in the theme of the importance (and liberating possibilities) of contesting fixed and limited images, disrupting the representations and labels that are so readily assigned to the deaf or deafness. Different strategies and styles are employed, from figurative creative writing or life narrative to the critical essay or media analysis. Yet all contributions emphasise shifting perceptions, commence from a position of not being comfortable with the given representations or ideas that surround deaf identity. The personal narratives and essays assert a strong sense of disjuncture between deaf reality and common representations and ideas of deafness. Reading these contributions, we gain an acute sense of not being at one with the image or idea of a deaf person, not being at one with the social world, not being any one thing but rather many different and varying things and roles. The conditions of possibility are touched upon in the personal reflective pieces, resonating with the critical essays in their exploration of the possibilities of destabilizing hegemonic representations. For example, in “Becoming Deaf”, Karen McQuigg’s personal reflective essay, she describes several stages of the deaf experience. Her description of her son’s responses and adaptations is moving, and Karen mines a range of emotional responses to deafness. She shares with the reader the advice and support she received from other people: some readers will remember with affection the role of Elizabeth Hastings and John Lovett in the Australian Deaf community. McQuigg’s reflections sharply highlight the fluid nature of our individual experience and understanding of deafness. She (and we do too) shifts from what was experienced and understood initially as a blank, a not-comprehending—a ‘blank’ that is linked with loss and constraints, grief, suffering and isolation—to a discovery of how those views and experiences can change, along with changing environment and opportunities. This comes across also in Christy L Reid’s piece “Journey of a Deaf-Blind Woman”: possibilities are linked with where the narrator is living, with life events as varied as training and job opportunities, changes in health, marriage, the birth and development of children, child rearing, and of personal triumphs. Michael Uniacke’s personal essay “Fluid Identities: A Journey of Terminology” has much in common with Jessica White’s essay as he too engages playfully with his ideas. He uses language and figurative play to challenge the reader’s understandings of deaf identity, and to demonstrate the fluid and multiple nature of identity. For example, his opening anecdote about the Hearing Impaired Businessman plays to an embodiment of the idea that many people have, through categories and labels, of a deaf person, as Other, a caricature figure with no interiority or humour or nuanced life. Uniacke engages with this figure in a kind of dialogue, making him surreal, highlighting his typecast nature. By the end of his essay, Michael has shown us how identity can be context-specific and composed of many parts. In “Interpreters in Our Midst”, Breda Carty takes us on a jaunty, personal and engaging commentary that provokes the reader into taking a fresh look at the role of interpreters in mediating/translating relationships between deaf and hearing people. She asks, ‘When interpreters are in our midst, whose interests are they representing? And why are those interests not always clear to the observer?’ Originally written as a short piece for the Australian Sign Language Interpreters' Association (ASLIA), the article is informed by Breda’s immersion in particular professional and personal communities and experiences. While the tone of her commentary is light-hearted, using film screen representations of interpreters to illustrate her points, Breda nevertheless succeeds in politicizing the subject of interpretation and interpreters. She makes us aware of the social assumptions and hierarchies that structure our understanding of interpreting, which, if left unexamined, might seem a neutral and apolitical practice. Rebecca Sánchez makes an exciting contribution to the field of poetry. In her paper “Hart Crane's Speaking Bodies: New Perspectives on Modernism and Deafness”, Rebecca writes about looking for ideas about deafness in unexpected places, namely the poetry of hearing modernist Hart Crane. Taking up the theme of embodiment, evident in several other papers in this edition, Rebecca offers an interesting connection between a poetics of embodiment—Crane was influenced by Walt Whitman, a trail-blazer in embodied language in American poetry—and the more literal embodiment of manual languages. Although Hart Crane was not writing about deafness per se, his work explores the potential of embodied languages to alter the ways in which we interact with one another. When asked to define deafness, most people’s first response is to think of levels of hearing loss, of deficiency, or disability. By contrast, Crane’s non-literal approach provides a more constructive understanding of what communicative difference can mean, and how it can affect our und,erstanding of language itself. Rebecca’s essay's strength arises from its demonstration of Crane's desire to imagine the possibility of a language that lives within the body as rich and enabling, as are manual languages. Miriam Nathan Lerner’s professional training as a librarian is evident in her filmography “The Narrative Function of Deafness and Deaf Characters in Film”. During 2010, she is collaborating with a technical support faculty member at the Rochester National Technical Institute of the Deaf to design a website with quick-time windows so that the reader can click on and watch film clips of the works she references in her filmography. A lively, chatty introduction to some forty-three films with deaf characters and deafness, in which she provides her admittedly quirky approach to categorisation, Miriam Lerner’s filmography will one day be recognised in the same breath as Jonathon Miller’s “Rustle of a Star: An Annotated Bibliography of Deaf Characters in Fiction.” (Miller was also a librarian: they obviously possess the requisite skills of categorisation!) Pamela Kincheloe’s article “Do Androids Dream of Electric Speech? The Construction of Cochlear Implant Identity on American Television and the ‘New Deaf Cyborg’” offers an important analysis of popular (mis)conceptions of deafness and ‘assistive technologies’ as is evident from American television representations of deaf people with Cochlear Implants. She notes the prevalence of cochlear implants in television drama, identifies a couple of very limited narrative frames that dominate such representations, and discusses their implications. In her discussion of the ‘abject’ horror associated in television series with the cochlear implant recipient (often already a corpse) Kincheloe asserts that the Cochlear Implant technology is increasingly used in such narratives to convey intensified anxieties, not only about the deaf Other, but also about technology and the emergent ‘cyborgs’, humans modified by technology. Sharon Pajka-West’s well-researched article “Deaf Characters in Adolescent Fiction”, excerpted from her doctorate thesis, originated in a request from a young deaf reader for a book with which she could connect. Pajka-West takes us on her pursuit to fulfil this request, giving us many fascinating insights along the way. Her blog is essential reading not only for anyone interested in the field of adolescent literature, but also for those who understand the significance of providing young deaf readers access to literature in which the multiple possibilities for deaf lives, deaf identities, and deafness are canvassed. In her article “Marginalising the Mainstream: A Signed Performance of The Miracle Worker”, Caroline Heim places deaf issues centre-stage. Her thesis is that a way needs to be found to increase access to theatrical events for the deaf. She tackles this by viewing a Crossbow Production performance of The Miracle Worker (the story of the teaching relationship between Helen Keller and Annie Sullivan from different perspectives: accessibility, funding, plot construction and actors’ interpretation, the detail of production design (sound, colour and tactile) and the use of theatrical device, and post performance discussion. Arguably, Heim’s article might have benefited from more focus on the concept of inclusion, rather than exclusion. The claim that not enough money is given to providing ‘access’ for the deaf to mainstream productions may be difficult to uphold as a stand-alone argument when the budget of the majority of Australian theatre companies would highlight the fiscal difficulty they have just getting productions on the stage. All the same, Heim’s article provokes us, the reader, into investigating the many layered meanings of ‘access’ and also reminds us, yet again, of theatre’s potential magic in engaging audiences across all spheres of life. In her essay “Looking across the Hearing Line”, Nicole Matthews has written a stimulating paper on youth, Deaf people, and new media. Her paper is especially interesting as an exploration of the intersection between disability and Web 2.0 technologies. In particular, Matthews picks up a thread of Web 2.0 technologies relating to visual communication and expression to provide some insights into the emerging, complex nature of Deaf users’ engagement with digital media in contrast with the continuing problems of inaccessibility and exclusion in the mainstream world. Conclusion: Learning Our Knowingness from What We Don’t Know This special “deaf” issue of M/C Journal is not a “project”, in the Modern sense of that word, i.e. a unified collective effort to define identity, in this case deaf identity, or to consolidate and express a unique world view. Nor does it seek to enlighten the public about what it is to be deaf. Such a totalising project would inevitably suppress heterogeneity and the specificities of people’s lives. Rather, this collection offers many different particular and localised accounts - some personal and poetic, some analytical, some working through critique - which explore the conditions of possibility for human subjects, and in particular, people who are deaf. The contributions highlight in very different ways the complex and shifting fields within which people’s lives and experiences are formed. These works give us insight into the varied and changing social and environmental conditions that not only shape our lives but are in turn shaped by who we are and by our practices and choices. The constraints and possibilities of people’s lives change significantly and differ widely. They are linked inextricably with where people are, in terms of geography or location, and with the circumstances they find themselves in or create for themselves: circumstances of gender, family, social networks, economics, education, work, lifestyle, health or illness, physical abilities, differences and limitations. These works stress the highly contingent nature of human social development and the fluidity of deaf experience rather than identity. Identity shifts and takes on meaning in relation to others and situations; we come to know who we are through a process of differentiating ourselves from others and from identities that we do not feel comfortable with. In almost all of these accounts here experiences of deafness are not the same those conjured up by labels or stereotypes. This act of disassociation from the usual notions of deafness, highlights that our received language and labels do not give us knowledge. Disavowal reminds us that we do not know, except through some disruptive encounter with the Other, whether that is the otherness of our own deafness or the deafness of others. These writings that demonstrate the particularity and detail of deaf people’s experiences, enable us to know the limits and inaccuracies of the labels and identities so commonly assigned to deafness and the deaf. Thus, we come back to the beginning and find our equivocal, tentative answers to the question, ‘how do we learn what we know about being deaf and deafness?’ We learn what we know in various ways, yet hearing or deaf, we are exposed to particular ideas of deafness, limiting labels and assumptions that reinforce ‘ableist’ values. These writings have demonstrated the proliferation of limited stereotypes; they recur in narratives, news stories, television and films, and have power regardless of their disconnection from the real, and from the lived experience of deafness. It is a significant starting point to recognise the limitations of what we think we already know, through our media and social institutions, of deafness. These essays and writings represent a different epistemology; they explore not what deafness is or how it can be defined, but different ways of knowing deafness. References Couser, G. Thomas. “Signs of Life: Deafness and Personal Narrative” Ch. 6 in Recovering Bodies: Illness, Disability, and Life Writing. Wisconsin: University of Wisconsin Press, 1997. Bauman, H-Dirksen L. “Voicing Deaf Identity: Through the ‘I’s’ and Ears of an Other.” In S. Smith, and J. Watson, eds., Getting a Life: Everyday Uses of Autobiography. Minneapolis: University of Minnesota Press, 1989. 47-62. Kisor, Henry. What’s That Pig Outdoors? A Memoir of Deafness. New York: Hill and Wang, 1990.

I sat alone on the beach under the shade of a big umbrella. My husband, Bill, and our three children were in the condo taking a break from the Florida sunshine. Dreamily, I gazed at the vast Gulf of Mexico, the brilliant blue sky stretching endlessly above. I was sitting about 50 feet from the surf, but I couldn't actually see the waves hitting the beach; I was almost blind. It was a windy day in late May and I loved feeling the ocean breeze sweeping over me. I imagined I could hear the waves crashing onto the surf, but the sound was only a memory. I was totally deaf. Although I had a cochlear implant and could hear the waves, the cry of sea gulls, and many other sounds with the technology, I wasn't wearing it at the moment and everything I heard was in my mind. As a child, my understanding of speech was better and my vision was clearer. My diagnosis was optic atrophy at age 5 and my vision gradually degenerated over the years. For unknown reasons, nerve damage caused hearing loss and during my teens, my hearing grew worse and worse until by the time I was ready for college, I was profoundly deaf. I chose to attend Gallaudet University because my high school teachers and my parents felt I would receive better services as a deaf and blind student. I feel it was a very good decision; when I entered Gallaudet, it was like entering a new and exhilarating world. Before attending Gallaudet, while I struggled to cope with hearing loss combined with severely low vision, my world grew smaller and smaller, not being able to communicate efficiently with others. At Gallaudet, I suddenly found I could communicate with almost anybody I met on campus using sign language. Thus, my self-confidence and independence grew as I proceeded to get a college education.It wasn't an easy route to follow. I didn't know Braille at the time and depended on using a CCTV (closed captioned television) electronic aid which magnified text, enabling me to read all my college books. I also relied on the assistance of a class aid who interpreted all my teachers' lectures and class discussions because I was unable to see people's signing unless they signed right in front of my face. It was slow going and often frustrating, trying to keep involved socially and keeping up with my coursework but when I was 13 years old, my vision specialist teacher who had worked with me from 5th grade until I graduated from high school, wrote a note for me saying, "Anything worthwhile seldom comes easy." The phrase stuck in my mind and I tried to follow this philosophy. In 1989 after 7 years of persistence, I graduated with a Bachelor's of Arts degree in psychology. With the B.A. in hand and having developed good communication skills with deaf and deaf-blind people using sign language and ASL (American Sign Language), I was ready to face the world. But I wasn't exactly ready; I knew I wanted a professional job working with deaf-blind people and the way to get there was to earn a master's degree. I applied for admission into Gallaudet's graduate school and was accepted into the vocational rehabilitation counselling program. While I thoroughly enjoyed graduate school experience, I got to work with my class mates one-on-one more often and there were a lot more hands-on activities, it became obvious to me that I wasn't prepared for graduate school. I needed to learn Braille and how to use Braille technology; my vision had worsened a lot since starting college. In addition, I needed a break from school and needed to gain experience in the working world. After completing one and a half years and earning 15 credit hours in the master's program, I left Gallaudet and found a job in Baltimore, Maryland.The job was with a new program for adults who were visually and hearing impaired and mentally disabled. My job was assisting the clients with independent living and work related skills. Most of the other staff were deaf, communicating via ASL. By then, I was skilled using tactile signing, putting my hand on the back of the signer's hand to follow movements by touch, and I made friends with co-workers. I felt grown up and independent working full-time, living in my own apartment, using the subway train and bus to travel to and from work. I didn't have any serious problems living on my own. There was a supermarket up the road to which I could walk or ride a bus. But I needed a taxi ride back to the apartment when I had more groceries than I could carry. I would leave a sign I made out of cardboard and wrote my address in big black numbers, on my apartment door to help the driver find my place. I used a white cane and upon moving to Baltimore, an Orientation and Mobility (O and M) teacher who worked with blind people, showing them how to travel in the city, taught me the route to my work place using the subway and bus. Thus, I was independent and knew my way to work as well as to a nearby shopping mall. One day as I stood on the subway station platform holding my white cane, waiting for my train, the opposite train pulled in. As I stood watching passengers hurrying to board, knowing my train would arrive soon on the other side, a woman ran up to me and started pulling my arm. I handed her my notebook and black marker I used for communicating with people in the public, telling her I couldn't hear and would she please write in large print? She frantically scribbled something, but I couldn't read the note. She then gave me back the pen and pad, grabbed my arm again and started pulling me towards the train. I refused to budge, gesturing towards the opposite tracks, clearly indicating I was waiting for the other train. Finally, she let go, dashed into the train before the doors closed. I watched the train pull away, sadly reflecting that some people who wanted to help, just didn't understand how to approach disabled people. As a deaf-blind traveller, it was my duty to help educate the general public how to assist disabled persons in a humane way. After I established my new life for a few months, Bill was offered a position in the same program and moved to Baltimore to join me. He had worked at the Helen Keller National Centre in New York where I met him while doing a summer internship there three years before. I was thrilled when he got the job working beside me and we got to know each other on a daily basis. We had been dating since we met although I was in college and he was working and living in New York and then Cleveland, Ohio. Bill being hearing and sighted, was skilled in sign language and communication techniques with deaf-blind people. He had a wonderful attitude towards disabled people and made me feel like a normal person who was capable of doing things. We shared a lot and were very comfortable with each other. After nearly six months together in Baltimore, we married in May 1992, several weeks before my 28th birthday.After our first year of marriage living in Maryland, Bill and I moved to Little Rock, Arkansas. We wanted to live closer to my family and parents, Ron and Judy Cummings, who lived in Poplar Bluff, Missouri, 176 miles north of Little Rock. I wanted to go back to school and entered the deaf education program at the University of Arkansas at Little Rock with the goal of becoming a teacher for deaf-blind students. I never dreamed I would have a deaf-blind child of my own one day. My vision and hearing loss were caused by nerve damage and no one else in my family nor Bill's had a similar disability.I was pregnant with our first child when I entered UALR. In spite of my growing belly, I enjoyed the teacher training experience. I worked with a deaf-blind 12-year-old student and her teacher at the Arkansas School for the Deaf; observed two energetic four-year-olds in the pre-school program. But when my son, Joe was born in June 1994, my world changed once again. School became less important and motherhood became the ultimate. As a deaf-blind person, I wanted to be the best mom within my abilities.I decided that establishing good communication with my child was an important aspect of being a deaf-blind mom. Bill was in full agreement and we would set Joe on the kitchen table in his infant carrier, reciting together in sign language, "The three Bears". I could see Joe's tiny fists and feet wave excitedly in the air as he watched us signing children's stories. I would encourage Joe to hold my fingers while I signed to him, trying to establish a tactile signing relationship. But he was almost two years old when he finally understood that he needed to sign into my hands. We were sitting at the table and I had a bag of cookies. I refused to give him one until he made the sign for "cookie" in my hand. I quickly rewarded him with a cookie and he got three or four each time he made the sign in my hand. Today at 16, Joe is an expert finger speller and can effectively communicate with me and his younger deaf-blind brother, Ben.When Joe was two and a half, I decided to explore a cochlear implant. It was 1996 and we were living in Poplar Bluff by then. My cousin, who was studying audiology, told me that people using cochlear implants were able to understand sound so well they didn't need good vision. I made an appointment with the St. Louis cochlear implant program and after being evaluated, I decided to go ahead. I am glad I have a cochlear implant. After months of practice I learned to use the new sound and was eventually able to understand many environmental sounds. I never regained the ability of understanding speech, though, but I could hear people's voices very clearly, the sound of laughter, birds singing, and many more. Being able to hear my children's voices is especially wonderful, even when they get noisy and I get a headache. That fall I went to Leader Dogs School for the Blind (LDSB) where I met Milo, a large yellow Labrador retriever. At LDSB I learned how to care for and work with a dog guide. Having Milo as my companion and guide was like stepping into another new and wonderful world of independence. With Milo, I could walk briskly and feel secure. Milo was a big help as a deaf-blind mom, too. With Milo's guiding help, it was wonderful following my children while they rode tricycles or bikes and the whole family enjoyed going out for walks together. Our second son, Ben, was born in February 1999. He was a perfectly healthy little boy and Bill and I were looking forward to raising two sons. Joe was four and a half years old when Ben was born and was fascinated in his new brother. But when Ben was 5 months old, he was diagnosed with Langerhans Cell Histiocytosis (LCH), a rare childhood disease and in some cases, fatal. It was a long, scary road we followed as Ben received treatment at the children's hospital in St. Louis which involved making the 150 mile trip almost weekly for chemotherapy and doctor check-ups. Through it all, Ben was a happy little boy, in spite of the terrible rash that affected his scalp and diaper area, a symptom of LCH. Bill and I knew that we had to do everything possible to help Ben. When he was a year old, his condition seemed stable enough for me to feel comfortable leaving my family for two months to study Braille and learn new technology skills at a program in Kansas City. My vision had deteriorated to a point where I could no longer use a CCTV.Bill's mom, Marie Reid, who lived in Cleveland, Ohio, made a special trip to stay at our home in Poplar Bluff to help Bill with the boys while I was gone. I was successful at the program, learning Braille, making a change from magnification to Braille technology. Upon returning home, I began looking for a job and found employment as a deaf-blind specialist in a new project in Mississippi. The job was in Tupelo and we moved to northern Mississippi, settling into a new life. We transferred Ben's treatment to St. Judes Children's hospital located in Memphis, 94 miles west of Tupelo. I went to work and Bill stayed home with the boys, which worked well. When Ben had to go to St. Judes every three weeks for chemotherapy, Bill was able to drive him. The treatment was successful, the rash had disappeared and there were no traces of LCH in Ben's blood tests. But when he was almost 3 years old, he was diagnosed with optic atrophy, the same eye disease I suffered from and an audiologist detected signs of inner ear hearing loss.Shocked at the news that our little son would grow up legally blind and perhaps become deaf, Bill and I had to rethink our future. We knew we wanted Ben to have a good life and as a deaf-blind child, he needed quality services. We chose to move to Pittsburgh, Pennsylvania because I knew there were good services for deaf-blind people and I could function independently as a stay-home mom. In addition, Cleveland, Ohio, where Marie Reid and several of Bill's siblings lived, was a two hour's drive from Pittsburgh and living near family was important to us. With regret, I left my job opportunity and new friends and we re-located to Pittsburgh. We lived on a quiet street near Squirrel Hill and enrolled Joe into a near-by Catholic school. Ben received excellent early intervention services through the Pittsburgh public school, beginning Braille, using a white cane and tactile signing. The Pennsylvania services for the blind generously purchased a wonderful computer system and Braille display for me to use at home. I was able to communicate with Joe's and Ben's teachers and other contacts using e-mail. Ben's Braille teacher provided us with several print/Braille books which I read to the boys while Ben touched the tactile pictures. I made friends in the deaf and deaf-blind community and our family attended social events. Besides the social benefits of a deaf community, Pittsburgh offered a wonderful interpreting service and I was able to take Ben to doctor appointments knowing an interpreter would meet me at the hospital to assist with communication. I also found people who were willing to help me as volunteer SSPs (support Service Providers), persons whose role is to assist a deaf-blind person in any way, such as shopping, going to the bank, etc. Thus, I was able to function quite independently while Bill worked. Perhaps Bill and I were a bit crazy; after all, we had enough on our plate with a deaf-blind son and a deaf-blind mom, but love is a mysterious thing. In October 2003, Tim was born and our family was complete. Having two school-aged children and a baby on my hands was too much for me to handle alone. Bill was working and busy with culinary arts school. We realized we needed more help with the children, plus the high cost of living in the city was a struggle for us. We decided for the family's best interest, it would be better to move back to Poplar Bluff. After Joe and Ben were out of school in June, my mom flew out to Pittsburgh to escort them back to her home while Bill finished his externship for his culinary arts degree and in the late summer of 2004, we packed up our apartment, said good-bye to Pittsburgh, and drove to Missouri. The move was a good decision in many ways. Poplar Bluff, a rural town in south-eastern Missouri, has been my hometown since I was 10 years old. My extended family live there and the boys are thriving growing up among their cousins. Ben is receiving Braille and sign language services at public school and reads Braille faster than me!While both Bill and I are deeply satisfied knowing our children are happy, we have made personal sacrifices. Bill has given up his career satisfaction as a professional cook, needing to help look after the children and house. I have given up the benefits of city life such as interpreting and SSP services, not to mention the social benefits of a deaf community. But the children's well-being comes first, and I have found ways to fulfil my needs by getting involved with on-line groups for deaf-blind people, including writers and poets. I have taken a great interest in writing, especially children's stories and hope to establish a career as a writer. While I work on my computer, Bill keeps busy engaging the boys in various projects. They have built a screened-in tree house in the backyard where Ben and Tim like to sleep during warm summer nights.“It's almost 5 o'clock," Bill signed into my hand, rousing me from my thoughts. Time to prepare for our homeward journey the next day to Poplar Bluff, Missouri.Christy and Family

There are days when having a child with Down syndrome can mean losing all hope of being an ordinary mother: a mother with run of the mill concerns, a mother with run of the mill routines. I know. I’ve had such days. I’ve also found that sharing these feelings with other mothers, even those who have a child with a disability, isn’t always easy. Or straightforward. In part I believe my difficulty sharing my experience with other mothers is because the motherhood issues surrounding the birth of a child with Down syndrome are qualitatively different to those experienced by mothers who give birth to children with other disabilities. Disabilities such as autism or cerebral palsy. The mother who has a child with autism or cerebral palsy is usually viewed as a victim - as having had no choice – of life having dealt her a cruel blow. There are after all no prenatal tests that can currently pick up these defects. That she may not see herself as a victim or her child as a victim often goes unreported, instead in the eyes of the popular media to give birth to a child with a disability is seen as a personal tragedy – a story of suffering and endurance. In other words disability is to be avoided if at all possible and women are expected to take advantage of the advances in reproductive medicine – to choose a genetically correct pregnancy – thus improving their lives and the lives of their offspring. Within this context it is not surprising then that the mother of a child with Down syndrome is likely to be seen as having brought the suffering on herself – of having had choices – tests such as amniocentesis and CVS – but of having failed to take control, failed to prevent the suffering of her child. But how informative are tests such as pre-implantation diagnosis, CVS or amniocentesis? How meaningful? More importantly, how safe is it to assume lives are being improved? Could it be, for example, that some lives are now harder rather than easier? As one mother who has grappled with the issues surrounding prenatal testing and disability I would like to share with you our family’s experience and hopefully illuminate some of the more complex and troubling issues these technological advances have the capacity to create. Fraser’s Pregnancy I fell pregnant with Fraser in 1995 at the age of thirty-seven. I was already the mother of a fifteen-month old and just as I had during his pregnancy – I took the routine maternal serum alpha-fetoprotein blood screen for chromosomal abnormalities at sixteen weeks. It showed I was at high risk of having a child with Down syndrome. However as I’d had a similarly high-risk reading in my first pregnancy I wasn’t particularly worried. The risk with Fraser appeared slightly higher, but other than knowing we would have to find time to see the genetic counsellor again, I didn’t dwell on it. As it happened Christopher and I sat in the same office with the same counsellor and once again listened to the risks. A normal foetus, as you both know, has 46 chromosomes in each cell. But given your high AFP reading Fiona, there is a significant risk that instead of 46 there could be 47 chromosomes in each cell. Each cell could be carrying an extra copy of chromosome 21. And as you both know, she continued her voice deepening; Trisomy 21 is associated with mild to severe intellectual disability. It also increases the risk of childhood leukaemia; certain cardiac disorders and is associated with other genetic disorders such as Hirschsprung’s disease. We listened and just as we’d done the first time – decided to have a coffee in the hospital café. This time for some reason the tone was different, this time we could feel the high-octane spiel, feel the pressure pound through our bodies, pulsate through our veins – we should take the test, we should take the test, we should take the test. We were, were we not, intelligent, well-educated and responsible human beings? Surely we could understand the need to invade, the need to extract a sample of amniotic fluid? Surely there were no ifs and buts this time? Surely we realised we had been very lucky with our first pregnancy; surely we understood the need for certainty; for reliable and accurate information this time? We did and we didn’t. We knew for example, that even if we ruled out the possibility of Down syndrome there was no guarantee our baby would be normal. We’d done our research. We knew that of all the children born with an intellectual disability only twenty five percent have a parentally detectable chromosomal disorder such as Down syndrome. In other words, the majority of mothers who give birth to a child with an intellectual disability will have received perfectly normal, utterly reassuring amniocentesis results. They will have put themselves at risk and will have been rewarded with good results. They will have been expecting a baby they could cherish, a baby they could feel proud of – a baby they could love. Our Decision Should we relent this time? Should we accept the professional advice? We talked and we talked. We knew if we agreed to the amniocentesis it would only rule out Down syndrome – or a less common chromosomal disorder such as Trisomy 18 or Trisomy 13. But little else. Four thousand other known birth defects would still remain. Defects such as attention deficit disorder, cleft lip, cleft palate, clubfoot, congenital cardiac disorder, cystic fibrosis, epilepsy, ... would not magically disappear by agreeing to the test. Neither would the possibility of giving birth to a child with autism or cerebral palsy. Or a child with vision, hearing or speech impairment. Neurological problems, skin problems or behavioural difficulties... We were however strongly aware the drive to have a normal child was expected of us. That we were making our decision at a time when social and economic imperatives dictated that we should want the best. The best partner, the best career, the best house ... the best baby. I had already agreed to a blood test and an ultrasound, so why not an amniocentesis? Why stop now? Why not proceed with a test most women over the age of thirty-five consider essential? What was wrong with me? Put simply, the test didn’t engage me. It seemed too specific. Too focused. Plus there was also a far larger obstacle. I knew if I agreed to the test and the words chromosomal disorder were to appear – a certain set of assumptions, an as yet unspoken trajectory would swiftly emerge. And I wasn’t sure I would be able to follow its course. Beyond the Test I knew if the test results came back positive I would be expected to terminate immediately. To abort my affected foetus. The fact I could find it difficult to fall pregnant again after the termination or that any future foetus may also be affected by a birth defect would make little difference. Out the four thousand known birth defects it would be considered imperative not to proceed with this particular one. And following on from that logic it would be assumed that the how – the business of termination – would be of little importance to me given the perceived gravity of the situation. I would want to solve the problem by removing it. No matter what. Before the procedure (as it would be referred to) the staff would want to reassure me, would want to comfort me – and in soothing voices tell me that yes; yes of course this procedure is in your best interests. You and your baby shouldn’t be made to suffer, not now or ever. You’re doing the right thing, they would reassure me, you are. But what would be left as unsaid would be the unavoidable realities of termination. On the elected day, during what would be the twenty-second week of my pregnancy, I would have to consent to the induction of labour. Simultaneously, I would also be expected to consent to a foetal intra-cardiac injection of potassium chloride to ensure the delivery of a dead baby. I would be advised to give birth to a dead baby because it would be considered better if I didn’t hear the baby cry. Better if I didn’t see the tiny creature breathe. Or try to breathe. The staff would also prefer I consent, would prefer I minimised everyone else’s distress. Then after the event I would be left alone. Left alone to my own devices. Left alone with no baby. I would be promised a tiny set of foot and handprints as a memento of my once vibrant pregnancy. And expected to be grateful, to be thankful, for the successful elimination of a pending disaster. But while I knew the staff would mean well, would believe they were doing the right thing for me, I knew it wasn’t the road for me. That I just couldn’t do it. We spent considerably longer in the hospital café the second time. And even though we tried to keep things light, we were both subdued. Both tense. My risk of having a baby with Down syndrome had come back as 1:120. Yes it was slightly higher than my first pregnancy (1:150), but did it mean anything? Our conversation was full of bumps and long winding trails. My Sister’s Experience of Disability Perhaps the prospect of having a child with Down syndrome didn’t terrify me because my sister had a disability. Not that we ever really referred to it as such, it was only ever Alison’s epilepsy. And although it was uncontrollable for most of her childhood, my mother tried to make her life as normal as possible. She was allowed to ride a bike, climb trees and swim. But it wasn’t easy for my mother because even though she wanted my sister to live a normal life there were no support services. Only a somewhat pessimistic neurologist. No one made the link between my sister’s declining school performance and her epilepsy. That she would lose the thread of a conversation because of a brief petit mal, a brief moment when she wouldn’t know what was going on. Or that repeated grand mal seizures took away her capacity for abstract thought and made her more and more concrete in her thinking. But despite the lack of support my mother worked long and hard to bring up a daughter who could hold down a full time job and live independently. She refused to let her use her epilepsy as an excuse. So much so that even today I still find it difficult to say my sister had a disability. I didn’t grow up with the word and my sister herself rarely used it to describe herself. Not surprisingly she went into the field herself working at first as a residential worker in a special school for disabled children and later as a rehabilitation counsellor for the Royal Blind Society. Premature Babies I couldn’t understand why a baby with Down syndrome was something to be avoided at all costs while a baby who was born prematurely and likely to emerge from the labour-intensive incubator process with severe life-long disabilities was cherished, welcomed and saved no matter what the expense. Other than being normal to begin with – where was the difference? Perhaps it was the possibility the premature baby might emerge unscathed. That hope remained. That there was a real possibility the intense and expensive process of saving the baby might not cause any damage. Whereas with Down syndrome the damage was done. The damage was known. I don’t know. Perhaps even with Down syndrome I felt there could be hope. Hope that the child might only be mildly intellectually disabled. Might not experience any of the serious medical complications. And that new and innovative treatments would be discovered in their lifetime. I just couldn’t accept the conventional wisdom. Couldn’t accept the need to test. And after approaching the decision from this angle, that angle and every other angle we could think of we both felt there was little more to say. And returned to our genetic counsellor. The Pressure to Conform Welcome back, she smiled. I’d like to introduce you to Dr M. I nodded politely in the doctor’s direction while immediately trying to discern if Christopher felt as caught off guard as I did. You’ll be pleased to know Dr M can perform the test today, she informed us. Dr M nodded and reached out to shake my hand. It’s a bit of a squeeze, she told me, but I can fit you in at around four. And don’t worry; she reassured me, that’s what we’re here for. I was shocked the heavy artillery had been called in. The pressure to conform, the pressure to say yes had been dramatically heightened by the presence of a doctor in the room. I could also sense the two women wanted to talk to me alone. That they wanted to talk woman to woman, that they thought if they could get me on my own I would agree, I would understand. That it must be the male who was the stumbling block. The problem. But I could also tell they were unsure; Christopher was after all a doctor, a member of the medical profession, one of them. Surely, they reasoned, surely he must understand why I must take the test. I didn’t want to talk to them alone. In part, because I felt the decision was as much Christopher’s as it was mine. Perhaps a little more mine, but one I wanted to make together. And much to their dismay I declined both the talk and the amniocentesis. Well, if you change your mind we’re here the counsellor reassured me. I nodded and as I left I made a point of looking each woman in the eye while shaking her hand firmly. Thank you, but no thank you, I reassured them. I wanted the baby I’d felt kick. I wanted him or her no matter what. After that day the whole issue pretty much faded, in part because soon after I developed a heart problem, a tachycardia and was fairly restricted in what I could do. I worried about the baby but more because of the medication I had to take rather than any genetic issue to do with its well being. The Birth Despite my heart condition the birth went well. And I was able to labour naturally with little intervention. I knew however, that all was not right. My first glimmer of recognition happened as I was giving birth to Fraser. He didn't push against me, he didn't thrust apart the walls of my birth canal, didn’t cause me to feel as though I was about to splinter. He was soft and floppy. Yet while I can tell you I knew something was wrong, knew instinctively – at another level I didn't have a clue. So I waited. Waited for his Apgar score. Waited to hear what the standard assessment of newborn viability would reveal. How the individual scores for activity (muscle tone), pulse (heart rate), grimace (reflex response), appearance (colour) and respiration (breathing) would add up. I knew the purpose of the Apgar test was to determine quickly whether or not Fraser needed immediate medical care – with scores below 3 generally regarded as critically low, 4 to 6 fairly low, and over 7 generally normal. Fraser scored 8 immediately after birth and 9 five minutes later. His markers of viability were fine. However all was not fine and within minutes he received a tentative diagnosis – whispers and murmurs placing a virtual sticker on his forehead. Whispers and murmurs immediately setting him apart from the normal neonate. Whispers and murmurs of concern. He was not a baby they wanted anything to do with – an experience they wanted anything to do with. In a very matter of fact voice the midwife asked me if I had had an amniocentesis. I said no, and thankfully because I was still feeling the effects of the gas, the bluntness and insensitivity of her question didn't hit me. To tell the truth it didn't hit me until years later. At the time it registered as a negative and intrusive question – certainly not the sort you want to be answering moments after giving birth – in the midst of a time that should be about the celebration of a new life. And while I can remember how much I disliked the tenor of her voice, disliked the objectifying of my son, I too had already begun a process of defining, of recognising. I had already noted he was floppy and too red. But I guess the real moment of recognition came when he was handed to me and as a way of making conversation I suggested to Christopher our baby had downsy little eyes. At the time Christopher didn’t respond. And I remember feeling slightly miffed. But it wasn’t until years later that I realised his silence had been not because he hadn’t wanted to chat but because at that moment he’d let his dread, fear and sadness of what I was suggesting go straight over my head. Unconsciously though – even then – I knew my son had Down syndrome, but I couldn't take it in, couldn't feel my way there, I needed time. But time is rarely an option in hospital and the paediatrician (who we knew from the birth of our first son) was paged immediately. Disability and the Medical Paradigm From the perspective of the medical staff I was holding a neonate who was displaying some of the 50 signs and symptoms suggestive of Trisomy 21. Of Down syndrome. I too could see them as I remembered bits and pieces from my 1970s nursing text Whaley and Wong. Remembered a list that now seems so de-personalised, so harsh and objectifying. Flat faceSmall headFlat bridge of the noseSmaller than normal, low-set noseSmall mouth, causing the tongue to stick out and look unusually largeUpward slanting eyesExtra folds of skin at the inside corner of each eyeRounded cheeksSmall, misshapened earsSmall, wide handsA deep crease across the center of each palmA malformed fifth fingerA wide space between the big and second toesUnusual creases on the soles of the feetOverly-flexible joints (as in people who are double-jointed)Shorter than normal height Christopher and I awaited the arrival of the paediatrician without the benefits of privacy, only able to guess at what the other was thinking. We only had the briefest of moments alone when they transferred me to my room and Christopher was able to tell me that the staff thought our son had what I had blurted out. I remember being totally devastated and searching his face, trying to gauge how he felt. But there was no time for us to talk because as soon as he had uttered the words Down syndrome the paediatrician entered the room and it was immediately apparent he perceived our birth outcome a disaster. You’re both professionals he said, you both know what we are thinking. But he couldn’t bring himself to say the words, say Down syndrome, and instead went on about the need for chromosomal testing and the likelihood of a positive result. The gist, the message about our son was that while he would walk, might even talk, he would never cook, never understand danger and never live independently, never, never, never... Fraser was only an hour or so old and he’d already been judged, already been found wanting. Creating Fraser’s Cultural Identity The staff wanted me to accept his diagnosis and prognosis. I on the other hand wanted to de-medicalise the way in which his existence was being shaped. I didn’t want to know right then and there about the disability services to which I would be entitled, the possible medical complications I might face. And in a small attempt to create a different kind of space, a social space that could afford my son an identity that wasn’t focused on his genetic make-up, I requested it not be assumed by the staff that he had Down syndrome until the results of the blood tests were known – knowing full well they wouldn’t be available until after I’d left hospital. Over the next few days Fraser had to spend some time in the neonatal intensive care unit because of an unrelated medical problem. His initial redness turning out to be a symptom of polycythemia (too many red blood cells). And in many ways this helped me to become his mother – to concentrate on looking after him in the same way you would any sick baby. Yet while I was deeply confident I was also deeply ashamed. Deeply ashamed I had given birth to a baby with a flaw, a defect. And processing the emotions was made doubly difficult because I felt many people thought I should have had prenatal testing – that it was my choice to have Fraser and therefore my fault, my problem. Fortunately however these feelings of dejection were equally matched by a passionate belief he belonged in our family, and that if he could belong and be included in our lives then there was no reason why he couldn’t be included in the lives of others. How Prenatal Testing Shapes Our Lives It is now twelve years since I gave birth to Fraser yet even today talking about our lives can still mean having to talk about the test – having to explain why I didn’t agree to an amniocentesis. Usually this is fairly straightforward, and fairly painless, but not always. Women have and still do openly challenge my decision. Why didn’t I take control? Aren’t I a feminist? What sort of a message do I think I am sending to younger women? Initially, I wasn’t able to fathom how anyone could perceive the issue as being so simple – take test, no Down syndrome. And it wasn’t until I saw the film Gattaca in 1997 that I began to understand how it could seem such a straightforward issue. Gattaca explores a world in which genetic discrimination has been taken to its logical conclusion – a world in which babies are screened at birth and labeled as either valids or in-valids according to their DNA status. Valids have every opportunity open to them while in-valids can only do menial work. It is a culture in which pre-implantation screening and prenatal testing are considered givens. Essential. And to challenge such discrimination foolish – however in the film the main character Vincent does just that and despite his in-valid status and its inherent obstacles he achieves his dream of becoming an astronaut. The film is essentially a thriller – Vincent at all times at risk of his true DNA status being revealed. The fear and loathing of imperfection is palpable. For me the tone of the film was a revelation and for the first time I could see my decision through the eyes of others. Feel the shock and horror of what must appear an irrational and irresponsible decision. Understand how if I am not either religious or anti-abortion – my objection must seem all the more strange. The film made it clear to me that if you don’t question the genes as destiny paradigm, the disability as suffering paradigm then you probably won’t think to question the prenatal tests are routine and essential paradigm. That you will simply accept the conventional medical wisdom – that certain genetic configurations are not only avoidable, but best avoided. Paradoxically, this understanding has made mothering Fraser, including Fraser easier and more enjoyable. Because I understand the grounds on which he was to have been excluded and how out of tune I am with the conventional thinking surrounding pregnancy and disability – I am so much freer to mother and to feel proud of my son. I Would Like to Share with You What Fraser Can Do He canget dressed (as long as the clothes are already turned the right side out and have no buttons!) understand most of what mum and dad sayplay with his brothers on the computermake a cup of coffee for mumfasten his own seatbeltwait in the car line with his brothersswim in the surf and catch waves on his boogie boardcompete in the school swimming carnivaldraw for hours at a time (you can see his art if you click here) Heis the first child with Down syndrome to attend his schoolloves the Simpsons, Futurama and Star Wars begs mum or dad to take him to the DVD store on the weekendsloves sausages, Coke and salmon rissottoenjoys life is always in the now Having fun with Photo Booth His brothers Aidan and Harrison Brotherly Love – a photo taken by Persia (right) and exhibited in Local Eyes. It also appeared in The Fitz Files (Sun-Herald 30 Mar. 2008) What Excites Me Today as a Mother I love that there is now hope. That there is not just hope of a new test, a reliable non-invasive prenatal test, but hope regarding novel treatments – of medications that may assist children with Down syndrome with speech and memory. And an increasingly vocal minority who want to talk about how including children in mainstream schools enhances their development, how children with Down syndrome can, can, can … like Persia and Tyler for example. That perhaps in the not too distant future there will be a change in the way Down syndrome is perceived – that if Fraser can, if our family can – then perhaps mothering a child with Down syndrome will be considered culturally acceptable. That the nexus between genetics and destiny will be weakened in the sense of needing to choose one foetus over another, but strengthened by using genetic understandings to enhance and assist the lives of all individuals no matter what their genetic make-up. And perhaps one day Down syndrome will be considered a condition with which you can conceive. Can imagine. Can live. And not an experience to be avoided at all costs.