D/T Interviews: Robaire Beckwith

Shawn Jackson D/T Interviews, Deaf And Deaf Culture, Interviews Deaf, Interviews Tourette, Tourette Syndrome 0 Comments

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Today, we meet a man from across the pond (England), a reader of this blog and someone who contacted me, saying how much he enjoys it. I came to find out that he is like myself, deaf and has Tourette Syndrome.
 
His story moved me so much, I had to interview him. His name is Robaire Beckwith. Here’s what we spoke about…
DEAF/TOURETTE: Hello Robaire. Welcome to Deaf/Tourette. I’ve told our readers a bit about you but could you tell them, in your own words, about yourself? At what age were you diagnosed with Tourette and were you always deaf or did you lose your hearing?

 
ROBAIRE: Though my symptoms became obvious at around age four, my TS was not correctly identified until my early twenties. My doctors had little idea what the tics were despite the signs being quite clear. My hearing difficulties were not recognized in childhood. I had problems understanding what teachers were saying in class. Though I do have partial deafness, I also have auditory integration issues which mean that though I may hear speech I may not interpret correctly what is being said. I depend very much on lip-reading which gives me additional information and greatly helps in understanding speech. My deafness though partial has become worse in adulthood. In addition I have hyperacusis due to neural damage that results in loud sounds being distorted, muddled and unpleasant (sensory hypersensitivity).

What challenges have you faced because of your TS and/or hearing loss?

 

The challenges of TS have been many and diverse. Apart from teasing at school which was never very severe the biggest challenge was from intolerant teachers who interpreted symptoms as bad behavior or intentional and defiant. I was relatively shy but had many friends and really did not encounter too many adverse challenges. The principle challenges were due to being distracted and not always understanding what was being said. I was a quick learner at school and read early and voraciously. My handwriting was very untidy and I got grilled for this by teachers. At university the difficulties I had were really overcome by sheer determination to do well. I knew I had to work hard especially as my reading speed was relatively slow but I put in long hours. I eventually graduated first in my class with a BS degree in Biological sciences and went on to Cambridge to do a post-graduate degree (doctorate). Both universities were never any less than supportive and to be honest I never encountered any overt prejudice from students or academic staff. I worked for some time in research and development and worked in computing and IT for a number of years. Following an accident in which I sustained neurological damage to my right arm and hand (dominant side), I was unable to continue with my IT work as it restricted my ability to use a keyboard. I also has difficulty with handwriting and could only write slowly. I began working as a teaching assistant in a special needs school and absolutely loved helping kids who I found I could relate too from personal experience. They had a variety of neuro-developmental conditions including autism, deafness and several had TS. I tried to get a place at teacher training college but was rejected before even reaching the interview stage. My dream had always been to go to medical school and train as a physician. My hope was to specialize in developmental pediatrics. I managed to get a place on a four year course. The challenges of my slow reading and writing speed were far greater due to the enormous work load and vast amount of reading and many written assignments. Though I disclosed all relevant aspects of my disability and requested accommodations, almost all were refused. I managed to get to within several months of graduation having passed all my clinical examinations and hospital rotations. However when assessed for fitness to practice it was deemed that my disabilities might represent a difficulty for my being able to carry out the role of a doctor. I was determined fit to work but was not permitted any of the adjustments for my hearing impairment or physical disability that I’d wanted during my final professional examinations. I asked if I could delay completing my training. I made an official complaint that the university was not complying with the UK disability discrimination act. It took two years for my complaint to be investigated and the outcome was that I had been subject to disability discrimination. I did not receive any compensation and had insufficient money to continue my training. After a further two years I was finally offered compensation in an out of court settlement. I refused the offer as it was very inadequate. The aspect that shocked me most was the lack of knowledge of TS and other ‘disabilities’ such as deafness on the part of the academic staff (many of whom were medically qualified). My disabilities were seen as a very negative thing even though I had successfully completed all my training requirements and had good commendations. The ‘concerns’ raised were in my opinion largely unfounded and resulted from misconceptions and prejudice about disability and the ignorance about TS was extraordinary. I imagine things are a little better in the US with the ADA providing legal protection but here in the UK the situation remains unacceptable and few students with disabilities get into university and almost none into any professional roles such as teaching or medicine etc. As a result of my experiences I have become active in lobbying for better inclusion in education and professional training for people with disabilities and a campaigner for better provision and understanding for people with TD.

 

D/T: Wow! That’s quite a journey! What is involved in the lobbying? How does that work?
 
Robaire: I write to the principle organisations involved in regulating the professions and also higher education to promote inclusion and bring to their notice cases of discrimination and unfair treatment. I have lobbied government bodies and also publish information online to educate about neurodevelopmental disabilities including TS. I contribute regularly to @TSfocus and @EMSDD on such issues also.
 Touching upon what you mentioned before about the doctors being ignorant of your disabilities and TS, have things gotten better since then?
No I don’t believe the situation has improved substantially in regard to appropriate clinical advice being given by most doctors on TS and it’s associated disorders. Diagnostic efficiency has risen a little but ignorance and inaccurate knowledge is still common. Many doctors have little evidence-based clinical knowledge considering the relatively high prevalence of TS and correct prescribing of medications when appropriate, and provision of other treatment approaches remains inadequate. I know from personal experience that medical students and trainee doctors receive little or no training in TS. Some surprisingly do not even know what TS is. Despite a large increase in published papers in medical journals and improved understanding of TS as a result of clinical research, this has not had a sufficient impact on healthcare professionals. There is a gradually improving awareness of the educational aspects of TS among teaching staff but too often knowledge and training is woefully inadequate. In higher education there is still a very marked absence of students with disabilities and frequently their disabilities are not accommodated effectively.
How are things now for you, personally? Have things gotten better for you in regards to your hearing and/or TS?
In terms of my hearing, I have experienced greater difficulties but do manage to compensate to some extent by being better able to lip-read (and face-read) but it does remain a very significant impairment. My TS does vary over time but has always been present and has not really altered with time however I am better able to compensate for some symptoms but not always. I do not take any medication, though in the past certain medications did make things worse. I subsequently stopped and decided not to resort to them again.
What’s coming up for you next?
As to what is coming up I am not certain. I remain in debt from my years at medical school and currently get by on the little I earn. I hope to find a suitable niche but in the meantime remain active in promoting disability rights and helping improve awareness about inclusion in education.
We’d like to thank Robaire for taking the time to talk with us at Deaf/Tourette and we wish him the best life has to offer!
In life, risk is part of the equation…

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