Ambulant – It’s written in a dictionary that this means that I’m able to walk and not confined to bed, thanks for that. I think even the place we go to reference a word is patronising me! Being ambulant disabled is quite a difficult thing to be, sometimes your day can be constant questions and explanations and that’s exhausting in itself. It’s tough practically having to beg for an establishments ‘Radar key’ to use the disabled toilet or the drawn out process of educating a car parking attendant about neuromuscular conditions, genetics, degenerative disease, my family tree and heritage. It’s all unnecessarily hard work, having to justify yourself and then… “Sorry sir, I don’t consider you disabled enough to use MY services” as he clutches his radar key with a widening, Grinch like smile.
I recently thought that this was just my problem, just me that goes through this but it isn’t, I asked a friend if he wouldn’t mind writing about being ambulant disabled too and he has and what he’s written is fantastic!
I met Steve in 2015 at a charity event, a very nice friend indeed…
“Being ambulant disabled is very much an invisible disability. Public perception of a disabled person is an individual who is in a wheelchair which is reinforced everywhere with signage for disabled facilities showing the image of a person in a wheelchair. Out of the 19% of the UK population who are classed as disabled only 1.9% use a wheelchair which was a very interesting stat to read.
My Name is Steve; I’m 36 and have Becker Muscular Dystrophy. At present I am still ambulant and use a stick to aid my balance. From a stationary position without my stick I look like any other person with no indication of disability. However getting up from sitting or when I walk my disability becomes more obvious. I have experienced prejudice such as when parking with my blue badge or going out and being accused of being drunk neither of which are pleasant. I do find people’s perceptions of the ambulant disabled very interesting. Some people find it hard to comprehend an individual’s inability to step up a kerb or to get out of a chair as they take it for granted and never give it much thought which in truth before my issues I was very much the same.
The main challenges to being ambulant disabled include logistics of routine daily life such as getting about the home and doing simple things like going shopping or to work. I find familiar activities are much easier than going to new places which cause me more anxiety as I am out of my comfort zone. The fear of the unknown such as obstacles I may encounter and perceptions of new people I meet can build up but things are never as bad as they seem. Planning ahead does help especially using google street view and just asking people in advance or asking for someone to go with you.
I find asking for help one of the hardest things which as my disability progresses will be something I will need to do more often. I guess I’m very stubborn and feel that asking for help is a sign of weakness and that I’m losing my independence. I feel embarrassed and self-conscious as I worry about what people think of me. As time has progressed it has got easier for me to ask for help which has enabled me to do some amazing things such as skydiving. I am lucky to be surrounded by some very supportive people who understand my condition, help with no fuss and treat me as just me.
Psychologically due to the degenerative nature of my condition I will need to use a wheelchair at some point in the future. At present I feel a little in limbo between good mobility and no mobility not quite knowing if and when things may get to the stage where walking become a health risk or physically too demanding. My solution is to not overthink things like this and to remain positive making the most of each day and when things change to just adapt and carry on. The worry of losing my ability to walk is a great motivation to maintain my health and keep my weight under control. In truth I am scared of losing my ability to walk but am reassured by the number of wonderful people I know who are full time wheelchair users leading great lives, achieving the most amazing things.
Every disability has its challenges and gaining good advice from others is vital. Being able to share experiences with those in similar situations makes it easier. For me I feel less alone and have learnt so much and try to pass it on a much as possible. For me using a walking aid has not only assisted my balance but is also a good visual indication to others that you may have some physical impairment. Control anxiety by planning ahead as mentioned above to increase enjoyment. Ask for help when you need it which is something I’m working on getting better at. Spread the word about your disability as many people are not aware but are always very interested. It makes people think and enables them to have a greater understanding of things they may never have thought about. The places I hate going most are waiting rooms, they are full of low chairs, strange people and the receptionist always says “take a seat”. I used to sit and struggle to get up but now I either scout out the best seat that may be next to a window sill, a table or something else useful to get up from or I just stand up until I get called in. You should do what is comfortable for yourself, don’t be rushed, don’t worry what others think and have a sense of humour.
I hope this has given an insight into what being ambulant disabled is like and if you are like me I hope have enjoyed reading my take on things.”
It is, as Steve said, challenging and sometimes frustrating, we really are the inbetweeners.
Personally I don’t fear a wheelchair, it’s not something that I’m worried about in the future, it’s a progression with myself and my condition and I cannot do a lot about it but try to keep moving for longer and stay annoyingly positive and outgoing. It just makes me feel slightly sad, that’s all. See, the thing is we’ve had some great times, these legs and me. I used to breakdance, I used to ride a BMX, I remember vividly running across a zebra crossing to get to the hospital in which my daughter had just been born and cuddling into my wife as we stood for our first dance at our wedding.
Things change and you have to adapt and adjust and I’ll do just that, I’m not bothered by it and I have friends in motor vehicle engineering with great ideas for wheelchair modifications, so we have a plan. My main focus nowadays is to stay as fit as possible and where I can, make an effort to look after my heart and core muscles.
As I mentioned, I met Steve at our charity event this year, we’ve been good friends since and plan to stay in touch, it’s great to bounce off someone who is in the same place as you and has a full understanding of all that you’re going through.
I wanted to write this because I sometimes feel invisible, just as my illness may seem to many, always ready with an explanation should I stumble, fall or show signs of absolute exhaustion. It’s our ambition to raise awareness for others so they don’t have to face all the questions, don’t feel inferior and don’t feel the need to beg for a key to the toilet!
All being well, myself and Steve will be together for another charity event in 2016 – watch this space.
|Myself and Steve, 30th August, challenge complete!|