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Open Features: A Fight For Independence

...The trapped feeling of not being able to go anywhere but where somebody chooses to take you has to be experienced. It makes you feel totally dependant, that you must “behave well”, no matter what the frustrations, because transport can be withdrawn at a whim. Most able-bodied people will not have experienced such dependence since they were children...

Shand Sivewright was an inspirational man who fought for decades to cope with his increasing disability. He also devoted many hours to improve the lives of others who were severly disabled.

Here is an account of a trip to the USA with his personal assistant, Linda McLean.

Open Writing is grateful to Linda for providing this wonderful and humbling account of a truly great man.

***
Linda McLean introduces Shand Sivewright.

Shand Sivewright was born in Edinburgh on 4th March, 1949. Educated in Edinburgh, he later graduated from the Glasgow College of Printing with a Diploma in Printing Administration, Management and Technical Studies. His disability was Muscular Dystrophy, and despite this he worked for twenty years in the printing trade while his disease progressed slowly.

Undeterred, he continued to work with and become involved in the many issues surrounding disability. He was the first disabled person in Scotland to self manage an Independent Living Scheme in 1989. He managed to persuade the Regional Social Work to run a pilot project of three people, of which he was one.

He worked out how many hours of care he thought he would need, built in a percentage to cover national insurance and PAYE, and allowed contingency funding for sick leave and holidays.

He was a founder of Lothian Independent Living Group, giving personal advice on how to set up personal living schemes and get advice. He also assisted in founding Freespace, a company set up as a core and cluster model, providing 24hour care to tenants living on their own. It required to be integrated into the Community, and have 51% disabled representation on the board. He served on numerous boards – including Margaret Blackwood Housing, and Capability Scotland. He was a founder Director of Lothian Centre for Integrated Living (LCIL).

Latterly, he was unable to do anything – from lifting a cup to scratching his moustache. (As the Americans so tactfully announced over the tannoy at an airport: “We have a gentleman who is TOTALLY IMMOBILE! I repeat: TOTALLY IMMOBILE!”)

Still, he remained immaculate, and interested in all around him.

He was awarded the M.B.E. for his services to Disabled Housing in 2001.

He died, surrounded by “his girls”, on 13th December 2004.

***

A Story of Courage

We, my personal assistant and I, boarded the plane for Indianapolis on 22nd October 1992, with the express aim of purchasing a vehicle that I could drive. For those with little experience of travelling with disabled people, I can only equate it to some kind of mental assault course, where the object of the exercise is to remain sane in the face of extreme stupidity: to remain calm while being hassled; to answer the most improbable questions; to guarantee at least three times that the wheelchair batteries are DRY cell . Eventually I have to point out that that fact is ENGRAVED on the casing!

The batteries are most important – for what reason, I know not, as there are different methods of handling batteries on almost every flight I have ever been on. Some pilots allow them to fly inside the cabin – most unusual – but they take the view that if the terminals are disconnected they are safe. Other pilots insist that they go in a WET CELL cardboard box, with polythene inside, with the terminals strapped, that they are labelled as DANGEROUS, and placed in the hold.

This mental endurance test lasts the best part of two hours, because disabled people must be loaded first, wherever possible. Once you reach the check in you are whisked away to see areas of the airport, which are totally boring. Not for us the shops and the relaxing read, or the utter boredom. An “All hands on deck” situation exists, and can create its own pressures. There is usually only one personal assistant with you, and both the airport personnel and myself place reliance on him or her. Now is the time that you want maximum performance from your staff, because everything must go swimmingly. First, comes the transfer from your own comfortable wheelchair to the standard airport wheelchair, (which I tried to delay as much as possible, through various whims) and the correct dismantling of your own. Obviously, you require to have a fully functioning chair when it is reassembled at the other end, so great care is required. The procedure will usually have been rehearsed several times beforehand: black tape will be at hand for the battery terminals: everything will be properly stowed overhead: the joystick – the flimsiest part of the chair and the most easily damaged, is covered with the cardboard part of an old toilet roll.

Then comes the transfer in the “Gurney Chair”, as they call it. About the size of a toddler’s pushchair, one adult has to be crammed into it. I am 6’2”, so it is far from comfortable. Usually the airport staff help, but I cannot be lifted by the arms, so my personal assistant again transfers me single-handed to the great astonishment of grown men. With head, legs and arms flopping about, we begin this procession down the plane. I ask why we are being taken so far, and I am answered by an assurance that it is nearer the toilet! How we are going to access such a facility does not appear to enter their minds or occur to anybody. We can now buy diamond watches in the air and drink champagne. The fact that a wheelchair user cannot possibly use the facilities on aircraft does not appear ridiculous to those who work in the industry.

This, of course, has to be accounted for in the Forward Planning. When you are up against such a lack of awareness, you have to be prepared for anything and everything. (Most of the subjects are unmentionable in polite company, but they must be addressed.)

Then comes the really tricky bit – being inserted by one person into an aircraft seat, which is very different from the one you are used to. As I have no lateral balance, and cannot brace at all, we take an extra belt with us. It is even trickier exiting the seat, but of course, but that is at least an hour after everyone else has left the plane – occasionally two. I have been fed sweeties by the cleaning ladies who assured me that if I wasn’t off the plane soon, I would end up in Ireland! There is usually no one left at customs to see our passports. Our suitcases are easy to spot because they are the only ones still going round the carousel.

Eighteen hours later (after a five hour delay in Chicago) we reach our destination. It is 10 pm at night local time, and we phone the airport hotel for a disabled room, as there is no transport to town. No problem, we are told. On arrival, we find that the toilet is totally inaccessible to a wheelchair, and head for the desk to query if this is really a disabled room.

The answer, of course, is no. All the disabled rooms were taken, so they just put us in a ground floor room. The fact that we might have required access to a toilet after such a long flight seemed to have escaped them - never mind wash and freshen up.

Fortunately, after a night’s sleep. We would be picked up by the firm who are converting the car – the reason for our journey - to be driven into town. Fortunately, I say, because there was no disabled transport at the airport – there is no equivalent to Handicabs – there were no hotels that have courtesy buses that can carry wheelchairs.

It is a vast sprawling city, mainly freeways, so walking is not a choice. The trapped feeling of not being able to go anywhere but where somebody chooses to take you has to be experienced. It makes you feel totally dependant, that you must “behave well”, no matter what the frustrations, because transport can be withdrawn at a whim. Most able-bodied people will not have experienced such dependence since they were children.

Once in downtown Indianapolis, we find that access to all buildings is easy. Kerb–cuts, as they call them here, are plentiful, and well done. The disabled person has a fair range of movement, unaccompanied, should he/she want it. Standard doors are 30 inches wide, leaving plenty room for even larger wheelchairs. Hotels, restaurants, theatres are all much more geared to the disabled than at home. Shopping malls abound. The big difference is that disabled, and profoundly disabled alike, DRIVE. This provision is from their Health Insurance, Medicaid. I have seen a disabled person, who spends her life face down on a stretcher- like contraption, driving from that position. When another girl presented with no arms at all, the joystick was situated in the roof of the car, and she was issued with a special helmet to allow to connect with the joystick, thus controlling the car by head and neck movements.

This forward thinking is what is new, and what gives the disabled person greater independence, and a greater opportunity to work as well as improved self-esteem. In Britain, in the nineties, a severely disabled person could expect only an indoor electric wheelchair. By this simple, thoughtless act, many disabled had to remain in or near their own homes, were reliant on someone to collect their benefits; needed someone to go shopping for them. Their lives became reduced to the living room and the television for company. Friends were expected to call on them. Their world gradually became smaller and smaller, as real and meaningful life ceased to exist. If you wanted to get outdoors, you had to forego your Mobility Allowance to pay for the chair, and since you were not working, that was a large part of your income. On this diminished income, you have to insure the chair, and frequently pay for expensive repairs.

Moreover, if you fundraise you will never again be issued with an NHS chair, as you have proved that you can pay for one yourself.

I was fortunate. I had friends who helped me with the research of the vehicle; who dropped everything to come across to America and support me; who helped me to fundraise. Not every one has these possibilities, and many are daunted by the uphill climb.

Motability asked me how I had managed to raise the total - and it was not easy -stating that I was one of the few to have successfully raised the balance. This should be explained. The Government brought out a Special Equipment Fund for people as severely disabled as myself in 1990. I applied right away, but found to my disappointment that I was refused. (I had a car in which I could be a passenger – my independence was not considered important.) I applied again, and was refused again. I immediately applied again – but by this time we had lost about six months, and the sum of £30,000 which I had understood would be available for the likes of myself had been capped at a mere £10,000. The number of severely disabled people wishing to drive had been underestimated. This left me with a £40,000 balance to reach on my own, as my car was going to cost £50,000. It was the middle of a recession. I was an individual. Thousands of letters requesting help were sent out- every positive response was dependent on my receiving the money from Motability. Motability would not give out the money until I had the rest. It was a difficult time. To this day, I wonder if they are still sitting on bundles of £10,000, waiting for someone to raise the balance. However, I was very fortunate, and through sheer tenacity and determination struggled through the two years it took to raise the cash. It did let me see that the Government had set up a poor system in allowing Motability to handle this scheme. The funds would have been better dealt with through a Charity, with Motability contributing their share.

So I drove for five years, and it was wonderful. This allowed me to drive people to works who were non-drivers, to participate fully in my committees, and even simple pleasures like taking the dog to the seaside. I was suddenly in control. I was in demand at parties, where people wanted to have a drink, and a chauffeur home. I could be of use again. Once my condition deteriorated to the extent that I was unhappy driving, I gave it up, as I always had said I would. There is no pleasure when you are having difficulty controlling a vehicle, and I surrendered gracefully, I like to think! Hopefully, my effort will inspire others. Anything is possible if you have an enabling environment. It simply requires belief in yourself, the courage of your convictions, and the willingness to stand up and be counted.


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