The Disabled Prove Their Worth.
IT was only when I worked closely with someone who was disabled that I came to appreciate the difficulties that he had to overcome. I first met Patrick Burke, in 2002, as a colleague on an overseas project. Patrick was an expert Information Technology analyst and programmer. He was diagnosed with Multiple Sclerosis in 1995 but was fully able to hold down a job in a stressful occupation that involved much overseas travel.
I came to know Patrick very well and we were able to talk frankly about a wide variety of social and work subjects without any rancour. I grew to know Patrick as a loyal colleague and an industrious worker. In 2010, I was running a project in Germany when Patrick’s name came up as a freelance worker who could be employed to tackle some difficult programming and analysis problems so I jumped at the opportunity to have him on my team.
I knew Patrick would not commit himself to a project if he felt that he was unable to attend everyday because of his physical difficulties. I briefed my team and explained Patrick’s condition. I was pleasantly surprised by their reaction; Patrick was treated with respect for his ailment but otherwise the same as any other colleague. Any minor health problem was easily resolved and there were no more difficulties than normal.
I have always been amazed at the way Patrick was able to deal with his physical condition and pain with dignity and good humour. He was an inspiration to me and to other members of our team. His cognitive abilities were as strong as any one else and his experience was invaluable; he made an enormous contribution to the productivity of the project.
What was the benefit of employing someone who has the tenacity and persistence to overcome the most severe physical problems? Well, there was the inspirational force to drive a team forward to meet its objectives.
Patrick has retired from project life to run his aid4disabled website and to speak publically about MS. We thought that now was a good time to reflect upon his condition and how it affected his previous working life.
There is some hope that medical developments will improve the life of those freshly diagnosed with MS.
It is clear that more provision should be made for people with disabilities to get from one place to another. This is probably the one practical thing that could make a substantial improvement to a disabled person’s work life.
It is also clear that employers should make more effort to see the benefit of employing disabled people. They could also help by adapting the working environment and the working hours expected.
Patrick does not believe that there is prejudice against disabled people but I disagree. Disabled people do not want to be patronised they want to be given a fair chance to prove their worth.
There was one extra question which I posed to Patrick over lunch. How much extra money did it cost my project to employ him? It was zero.
When did you discover that you had MS?
I was diagnosed in 1995. Looking back my first attack or relapse was in 1979 but I did not go to the doctor and the problem went away.
What was your reaction?
I did not know anything about MS and there was no help offered when I received the diagnosis.
Did the specialists give you an accurate prognosis about how the condition would proceed?
I did not receive any advice. Who knows, or can truly know, how the disease will progress? Everyone is slightly different.
Did you feel that life had cheated you?
It is difficult to say. Yes, I do feel cheated, I have lost my career but it has also given me new opportunities – e.g. the website and talking about MS. I try very hard not to allow the result of MS to affect me. I have felt angry and depressed and would love for there to be a cure but, sadly, one has not been discovered.
What is the relationship between genetics, geographic location and climate, that we have talked about often?
Very complex: the closer you are to the pole, North and South, then the more likely you are to get MS. The lack of Vitamin D and sunlight is a factor. Also SPF element in make-up and sun-cream is stopping skin generating Vitamin D. Rickets is appearing. The lack of a balanced diet is a factor. The Genetic factors are more likely to be carried by the female than the male in a ratio of about 2: 1. Smoking doubles the chance of getting MS. The highest occurrence of MS is in the Orkney Isles; 402 per 100,000 of population. An occurrence of 30 per 100,000 is considered to be serious.
Is there a cure for you on the horizon?
Define a cure. In cancer you are given 5 years for the all clear. For MS it will probably be 15 years. Yes, there are drugs that reduce the occurrence of a relapse by up to 70%. There is a lot of research.
How about the prognosis for those who have just been diagnosed?
Depends how serious the MS but for RRMS (Relapsing Remitting) patients, if the relapse is serious then you are more likely to be treated. There is no treatment for PPMS (Primary Progressive). I have moved from RRMS to SPMS (Secondary Progressive) – I am on a trial to see if progress can be reduced. A monthly infusion of Tysabri is very good for RRMS.
How did the condition affect your working life in IT?
I stopped work in 2012. It was getting harder and harder to get new contracts as my MS got worse and worse. It was affecting my balance and ability to walk. Towards the end, I was finding that my short term memory was deteriorating. I don’t believe my cognitive ability was affected. I definitely got the feeling that if the headcount had to be reduced then my name had a habit of being the first out of the hat.
What about the attitudes of your colleagues and management?
My work colleagues on the whole were very supportive. I know of the occasional person who felt that the project would work more efficiently without me. The contract computer business is very competitive and in the last year or so I was finding this difficult to keep pace with. Many people recognized my ability but saw the MS as a handicap or disability.
Did you ever feel that there was prejudice against you?
Difficult one to answer: when there is a big project with milestones and deadlines then it is obvious that the fittest person would be selected. Also, it was a constant battle to keep up to date with the new developments in the work place. This was because I was a freelancer so training was not available.
Even though the condition has not affected your mental abilities do you feel that your physical condition affected the way your colleagues or the management looked at you from a work point of view?
No, because the work as a computer consultant is sedentary so physical condition was irrelevant.
Do you feel that enough provision is made for disabled people at work?
Accessibility is getting better. The major problem is that a disabled person frequently cannot manage a full time job. There is a reluctance to make a job a 20 or 25 hours week. This is a matter that needs to be addressed by the people who create jobs. Public employers like county councils are getting better.
Should there be legislation to encourage employers to take on more disabled people?
As a whole I think there is enough legislation, the problem is that there is not the urge within the management of the company to hire disabled people. Many large companies like to foster good relations and hired a disabled person or two.
Should disabled people be included in anti-discrimination legislation?
What about the facilities to help you when you are travelling around?
It’s getting better: wheelchairs in airports and ramps for surface line trains. The London tube is a no-no but buses are generally excellent.
You have a strong will to succeed and you have the persistence to perform well. Is this persistence and will to succeed catalysed in any way by your condition or have you always had these qualities?
Always been determined, but it has increased since I have become disabled. Also, I have become more focused over the last few years.
Does a strong will and persistence to succeed help alleviate the problems surrounding your physical condition?
Do you ever feel that you have something to prove – that you can succeed despite the difficulties?
I get annoyed when people do not consider the disabled. Recently, I went to a meeting for people with MS: OK the meeting place was disabled friendly but I had to go by train and the station was not step free. That sort of thing makes me seethe with anger.
When I worked with you, you were sometimes unwilling to accept physical help and you had a real sense of physical independence. Do you ever feel patronised by do-gooders?
No, people in general wait for me to ask for help. If unwanted help arrives then I tell people I can cope all right. If I need help, people will help me by being polite and courteous.
Do you ever feel like giving up?
No, I would be bored. I have to have something to do.
What hope is there for the future? Do people who have recently been diagnosed have a reasonable expectation of leading a normal life?
There is no cure. Medicine is able to significantly reduce progress in people with Relapsing Remitting MS. MS varies so much, so almost impossible to answer. Some people carry on their whole life as if nothing has happened, other people in a nursing home at 40.
What is the future for you now that you are doing public speaking about MS?
The future is good as an MS speaker. Will not become a millionaire but enjoy the work, meet interesting people and gives me a reason to get up in the morning.