Jonathon's Story

By Jonathon
September 2002

Webmaster's note: This article was originally written for Holding Hands, but due to lack of space we have added it the website - hence the many references to HH in the article!
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Well, after a lot of badgering and threats from José, I have finally managed to put my fingers to the keyboard, and put together my long promised contribution for the Type III page. When I first put together this piece in January, I was having a day at home having taken a tumble on the ice which left me with a black eye many a boxer would be proud of. Well it's now early September and having received my Holding Hands I thought I had better deliver on my promise, and forward the article to José.

Firstly, to introduce myself, my name is Jonathon, I am 37 years old, and I have type III SMA. (This sounds like the start to an AA meeting). I have been married to Jen for 8 years, who is a teacher. I have a daughter Helena who is 2 and Sam who was born in February. I work for the UK Immigration Service and I am currently responsible for managing the staffing and finances for the UK border control. I am afraid that juggling work and two young children doesn't leave much time for writing articles for Holding Hands.

Diagnosis

To give a bit of history to my SMA diagnosis; my mother first thought there was a problem with my movement at around the age of 5. As a result she took me to our GP who assured her that it was something that I would grow out of. By the age of 12, despite the GP's assurances, my mother clearly felt there was still something wrong, and after seeing a different GP we were referred to the Royal Hospital for Nervous Diseases. After a 3-week stay in hospital, which included a very painful EEG conducted by a psychopath, (who tried to convince me he was the best judge whether his actions hurt) a muscle biopsy (which has left quite a scar), and being paraded semi-naked by Roger Banister in front of hundreds of medical students, they finally diagnosed I had Kugelberg-Wellander syndrome. They told my parents there was very little they could do, so to go away and get on with my life.

Education

So getting on with my life as instructed, I went to the local grammar school. Although I can concur that your schooldays can be the best days of your life, the SMA condition caused some difficulties at school. PE, athletics and football I can safely say were not my stronger subjects, and I have memories of many cold afternoons being made to play football or hockey, albeit very badly and slowly. Despite being made to play football, there were some advantages to having SMA. I never had to do the annual cross-country run over the North Downs, and there was some pleasure in seeing the envious eyes as I went off to do homework, whilst the owners of the envious eyes trudged and staggered through the mud. I then went on to get a rather indistinguishable set of A-levels, as partying seemed to have far greater attractions than revising.

After a year out, I went to Portsmouth Polytechnic to study Quantity Surveying. In hindsight this maybe was not the wisest of choices, but as my mobility was not greatly affected at that point, and as no doctor had heard of Kugelberg-Wellander syndrome the pathology of the SMA was unknown - so why not - the money was good when you graduated? I left college in 1987 and started work as a Quantity Surveyor. The work wasn't too exciting, and the SMA didn't cause too many insurmountable problems, although on occasion climbing into site huts was near impossible without some assistance. After a couple of years working in the UK I went to work in Australia for a year, which was absolutely fantastic. Whilst there I caught the train across Australia to Perth, and also taking in Ullaroo (Ayers Rock), Alice Springs and Darwin.

Work / Medical

I then returned to the UK in 1990, and continued working as a Quantity Surveyor. After a year back in the UK I was made redundant for the first time. I then found another job, and after another year I was made redundant once again. I vowed at this point, as I could see there had been a decline in my condition, that I would not return to the building industry. After 18 months of being unemployed I took up employment with the Home Office as an Immigration Officer.

During my period of unemployment I took the opportunity to update myself as to my condition. I was referred to Guys Hospital, and was seen by Professor Hughes, who spent a great deal of time updating me of progress and I also was advised that my condition was also called SMA and there was a support group called the JTSMA. During this time, I also had an MRI scan, which given my height (6ft 3in) took quite a considerable time. Having the MRI scan is effectively having your body slid into a test tube head first, with no room to move, and therefore no way to lever your way out in the event of an emergency. As a result of the scan I have become quite claustrophobic - the underground in rush hour does not rate as one of the most thrilling experiences. Following Prof. Hughes investigations, and although the news was not as I had hoped in that a cure was not around the corner, I felt relieved that I was not alone and there was ongoing research, and I was not going to die within the next 10 years as I had been led to believe by one GP.

Work and Disability

As I said earlier, I started work as an Immigration Officer, based at Heathrow. Shortly after starting work, I married Jennifer in February 1994. The Home Office was initially excellent, and the Department's Disability Liaison Officer was wonderful. Whilst at Heathrow I was given a centre car park pass, as the step onto the staff bus was too high. They also added a ramp to the watch-house so walking up the steps wasn't as problematic as it had been. Unfortunately things haven't continued in this vein over recent years, and disability seems to have taken on a lower priority than before, despite the introduction of the DDA.

I have recently been promoted twice within the past two years, and for the first promotion, despite applying under the Government's Guaranteed Interview Scheme, the Department failed to read the application form and rejected my application. I protested, and my application was re-instated. I also asked that for interview whether I could have a static chair without any arms so I could get up unassisted at the end of the interview. On the day of the interview, I was given a chair with wheels and arms! Again after protesting, I had to conduct my interview on a kitchen stool. Fortunately, and I am not sure whether my protests worked to my advantage, I was successful at my interview. For my most recent promotion to Inspector I again had to do my interview on a kitchen stool, which for 50 minutes was very uncomfortable, and I became more distracted about being able to get up at the end of the interview than the interview itself. I was unsuccessful but appealed against the result and was re-interviewed with my choice of chair and was successful. Despite the above, the department are investing considerable sums in other equal opportunities areas, and have only relatively recently created a disability support group, which has met in London on a couple of occasions which is nigh on impossible for me to reach by public transport.

Viewpoint on SMA III

I must say that despite the negatives of SMA III, there are many positive sides. I have obtained tickets to the front row at Twickenham, as the steps at Twickenham are too difficult to climb. I mentioned my condition to Virgin Atlantic when Jen and I flew to California a couple of years ago, as a result nothing was too much trouble for them and I would thoroughly endorse the services of Virgin Atlantic over the other main UK carrier. Also I have found that once people are aware of the problems that I may encounter as a result of my SMA, most people will go out of their way to accommodate me. But it normally requires a pro-active approach on our part - I use "our" as Jen is often more keen to advise people of the difficulties, as I get embarrassed and I would rather try and find a way round the problem without inconveniencing anyone - the British way.

All in all I would say that I am fortunate in that I am still mobile, and as yet get around without the use of any aids. Although in my ideal world, there would be no gravity or slidy floors, as getting up stairs, getting up from chairs, etc. would be so so easy. Also a world without ice would be good, as my bruised left eye from January would testify!