I am disabled right, according to The Expanded Disability Status Scale (EDSS). The EDSS scale ranges from 0 to 10 in 0.5 unit increments that represent higher levels of disability. Scoring is based on an examination by member of the medical team or whoever is dealing with your disability. https://www.mstrust.org.uk/a-z/expanded-disability-status-scale-edss
I believe at the moment my scale is 6.5 and I am aiming to stay there as long as I can.
6.5 Requires two walking aids – pair of canes, crutches, etc. – to walk about 20m without resting. I use a rollator for me is the same as two canes.
I want to live as good a life as I can. I bought myself an electric wheelchair and my friend would take me out in the car and we would go off shopping. I remember one particular day we were in a famous store to look at some clothing. In minutes i was totally tangled up as the rows of clothing were not wide enough for me to negotiate through the aisles. It was really frustrating for me. So we went to another shop and similar happened.
I was beginning to think i would never be able to buy anything, and really sadly that is why i confine myself to the house and buy online as it is so much easier, but it does limit my life and isolates me even more.
Oh then the supermarket smack bang in the middle will be a load of metal baskets which stops you again from moving around them. I mean really.
Ok so off I go for jolly jaunt around town. There is a pavement with a canter lever which slopes right downwards and you have to take you life in your own hands to negotiate it. Not only that it also has Blister tactile squares, for the blind, and this makes it even harder in a wheelchair or scooter. I have nearly come foul with this bit of pavement and ended up in the road, lucky for me there was no cars turning right or left into it.
Ah then you get to the shops and you want to go into them even the bank on the corner before it closed had no ramp for me to get in so i was excluded from going in there so ended up once again relying on the Internet to do my banking.
Even in 2019 shops are ignoring the rights of disabled people who have to use tools such as rollators, wheelchairs and scooters. It is hard enough being disabled but why should we not be able to go into shops easily. Many never provide you with wheelchairs which would help a lot.
Then I thought to myself i really would like a new scooter one with a cover over it so when it rains i can still get out and about. So I did a lot of research, and found one a really nice scooter with a canopy which can be moved back and stored behind your seat, and if it rains, you can simply un-pin it and cover yourself (Scooterpac)
Sounds so easy doesn’t it. Like having a convertible and taking the top down or over yourself.
You can choose to have the cover on or off. The scooterpac is a great invention to be honest, as the idea is it can be stored behind your seat then when it rains you simply pull it back over yourself.
So when you watch a video of it well it looks pretty darn good and easy.
So they use a young women on the video I watched, she made it look all so easy, and I suppose to be fair if your not weak on the upper part of your body it really would be.
The first thing you have to do is take the cover off the scooter pac which was exhausting as it was very tight. It’s there for protection and to keep the actual top tidy and secure.
Now why oh why oh why do they not use a DISABLED PERSON to show the demo? I mean seriously. I was stuck and it was exhausting as i had to pull this canopy over and it was high and my arms were tired and exhausted. To fold it back away did not work for me as the person who had fitted it put the sides on the wrong way. Once that was sorted(I had to get the scooter company out as no one could do it not even healthy people) trying to fold the sides and secure them to the back was really difficult for me. Oh and having to put the cover back over the top cover of the scooterpac was a nightmare really hard to do. Very tight and I ended up getting my young lad who was decorating my flat at the time to do it, and honestly he will confirm even he had a struggle with it.
If your not too disabled the Scooterpac is a really great idea. I would have loved it but trying to put it away was just too hard for me. A really great idea i would highly recommend it, but if your very disabled you would be better with a cover that stays on.
So well now I had my scooter sorted it was time to go out into town. I was excited but then I hit the first obstacle?
Getting out of the park where I live.
Both ends of the park you have to negotiate one of these.
The shape says it all, my bottom can pass but the top of me has no chance. The large gate is locked also only for council.
Let me rewind. I need to go down into the local park to take the dog for her walk, and before I changed my scooter for a bigger more reliable one, I could go into town even by negotiating the above bollards. But the access to the park even that is a chore as there are two sets of gates. The last gate is a nightmare as its tall and you have to find a way to stand a bit to open it then of course it opens INWARDS not outwards (I mean really who designed these gates for disabled living quarters). They obviously didn’t have a clue. Now I have my dog with me, and doing this is heart stopping as I am always frightened I am going to run her over, but she seems to have learnt self preservation thank god.
A picture of my first obstacle double gates which you have to negotiate on your scooter.
Next obstacle is a tall gate as I said above it opens inwards. See video above as I have included it at the end of the video. Now once you get through it safely and close it behind you then you are in the park. BUT If you want to go into the town you are immediately stuck as the barriers are not big enough to allow me through (I am not the only one who lives in my flats who cant get out this way).
This is what you come up against its access to the town well its a barred access to the town as i cant get through it with my new scooter.
Once we finally get through the tall gate though if we are just going for a walk we have a lovely time going around the park and she enjoys it.
The barriers. Now the idea of these barriers I believe is to stop motor bikes and bikes. or odd shaped people from entering. WRONG, as every day I see bikes in there and on occasions there are motor bikes at night using the grass as grass track race. The point is down the bottom corner is an area which is OPEN but has a rock in the middle so I am not sure I want to try going that way but motor bikes have no problems.
Surely there must be another way of stopping the nuisances but also allow the disabled a right of way to live in their town without difficult obstacles I wonder how other towns deal with these issues. Please share good practices please.
OK YOU COULD if you wanted to go the long way round. It’s a long path which is so uneven and full of holes and dips and slopes, you take your life in your hands. By the time you get to the bottom and closer to town you feel like you have been in a roller coaster. I come home feeling awful. Even with a scooter with good suspension you sure get a bashing about and I wear my seat belt as sometimes with the slopes you feel like your going to topple over (I know that I wont but its difficult when you are trying to stay safe with pedestrians around and a dog who is walking by your side. When I finally get home boy I feel like I have been in the gym as everything aches.
Going long way round.
Then the scooter its really well made. Excellent. But it is too much scooter for me as I am very weak in my arms and found it hard for me not to loose grip on the tiller as it was very light touch and any bump I would loose grip which is quite scary.
Any manufacture of disabled products should ensure all their products are tested or displayed with disabled people. Every persons disability affects them differently.
Councils perhaps you should get someone not disabled to road test your towns, and shop keepers do the same too. Just walk or ride in my shoes for one day and you would soon learn just how disabled friendly we really are. Ok you get points for certain things but ultimately you are excluding us from having a normal life as we could possible have, as really its off putting struggling to get in shops time consuming and frustrating that a lot of disabled people now dont bother and spend more time at home or on their computers buying on line, rather then going to the local shops, because at least buying on line you get treated with respect and every delivery driver i have come across has been amazingly helpful and kind.
I never asked to be disabled I just want an easy life, i don’t want nor do i need any more barriers thrown at me. Next time you want to design something for example like the barriers in parks just remember that a disabled person may have to negotiate it. You should think disabled first before you decide to do these things as there are 11 MILLION people just in the UK who are disabled.
Sadly everyday more and more people are becoming disabled and its up to local authorities and manufacturers to get mobile and disability friendly in order to allow us to have a good and enjoyable life, not one which has barriers chucked at us like bad pavements, poor management in shops and unfriendly disabled aids which have not been tested by the exact people they are designed for.
3 thoughts on “Try being disabled for a day and not feel excluded from normal life……”
I share your wows. I have PPMS and only go outside with a manual wheelchair, as I haven’t yet got a ramp/low threshold doors to get my powered wheelchair outside! An occupational therapist is due to come over today to discuss progress…
good luck hun, hope it goes ok for you. x
Everything thing you said is SO true. Most people will never know or understand what disabled people go through each and every day. The old song by Joe South , Walk a mile in my shoes says it all. Thanks for sharing !
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