Donny’s story

When I started my own journey into disability (as a result of a degenerative neurological condition), I looked around outside me for help, support or guidance. As part of trying to come to terms with the situation I found myself in, I needed some information:

“If I’m going to be disabled, can someone tell me about what it’s like being disabled in the north east, are there any do’s and don’ts, things to look out for and things I needed to do.”

I went to visit Disability North, and recoiled at the site of all of the wheelchairs, special beds, toilets, hoists, etc. When I was looking at the selection of standard issue disabled kit in front of me, thinking it all looks so horrible, loads of tubing and grey or white plastic, my heart sank, I felt that my destination was a load of shit-looking assistive technology. I am quite an image conscious person and what I was looking at did not fit my style at all. I thought, are there no disabled designers or even someone with some design experience? Anyways, I came away from Disability North feeling distinctly down in the dumps. I wonder if I had met myself now, those 10 years ago, what advice would I give myself? So here goes:

1. Do not panic. Things are not as bad as they seem and everything is going to be okay. You will work your way through all of the challenges that are put in your way in your own good time, try not to worry about things. You will learn things as you go and respond skilfully to things that once upon a time, you would have considered unsurmountable.

2. In order to live, you have to function; as your body’s functions decline, you need to find a way to respond. Not everyone’s response is going to be the same, even with the same disability, so depending on the nature of your impairment, you may need help with getting around such as needing a wheelchair, stick or crutches; you might need a special diet; you might need to change your home, sleep in a special bed; drive or be a passenger in a specially adapted vehicle; you might need to carry around with you specific equipment to help you, such as ramps. You will need to give all of these things some thought because the easier you can make it for yourself to get around and function, the better your life will be. Don’t worry about getting everything right first time, you will use many things which are not very helpful and stumble across things which become essential.

Then when you have figured out what you need, you need to fund it. There is equipment you can get for free from the council/NHS (generally dependent on an assessment of some sort, such as occupational therapy) such as grab sticks, toilet assistance and various bits of assistive technology. I generally find this to be quite basic. If you work, you can apply to Access to Work (links below) for a range of products and services, from motorised wheelchairs to taxis, whatever you consider necessary to keep you in work. This is great because you have a high level of control in choosing what you need, on a five year rotation, i.e. a new wheelchair every five years, or whenever a new need develops. It also means you can buy relatively expensive items or better quality than that available via the council/NHS.

3. Get yourself a blue badge. It will give you lots of freedom, more than non-disabled people have and you can use it to your advantage. You get three hours free parking on double yellow lines.

4. If you travel by car, get in touch with Motability who provide vehicles for disabled people in exchange for their motability component of their PIP, which is about £250 [NB: you can still work and receive the mobility component]. Depending on your income/situation, you can receive a contribution or a grant.

5. If you’re working, get onto Access To Work. If you’e not, get onto PIP.

6. Take time to process things. Your world has changed and it will take some getting used to. Give yourself time to adjust to your new situation and forge different relationships with different people. This is some of my processing:

  • I felt disability fundamentally took away my control and agency, at least that’s what I thought. I found that all of the barriers that you come across in every day life, such as trains with no ramps or disapproving glances, singularly and cumulatively eroded how much you were in control. As my condition worsened, a preoccupation of mine was to maintain as much agency and control as possible, as without it, your mental health is under threat. My most darkest times have been when I have been the most helpless. From being able to decide when I want to go to bed, to picking things up from the floor, I wanted to be the person that was doing it. I found that in order to be in control, you had to be constantly adapting, developing and thinking, most importantly.
  • My relationships with people fundamentally changed: my relationship with my partner changed from wife into carer and that takes a while to get used to and a long time to process as well, but finally after thinking about it, you will come to terms and find reward in different things. My relationships with my other family changed and I found family visits difficult as I felt they were a measure of my progression into disability and I did not like how they looked at me when they saw me, so I had to protect myself from that where is my feeling. My relationship with people in my community changed and there was a degree of embarrassment about how I was appearing to people, either on crutches or in different wheelchairs and again I did not like how they looked at me with pity in their eyes. I chose to go to new places where people did not know me from before and would accept me as I would present. I found a new lease of life in the company of other disabled people. I thought here is a group of people who know exactly what life is like for a disabled person and in whose company I could relax, because they understood my life in a way that no non-disabled person could hope to. After experiencing the world as a disabled person, realising that I find myself beset by a world which is trying to take away my previous sense of control, I felt compelled to speak out on behalf of others who may lack the opportunity or capacity and who need a voice. This makes the task of processing things easier because it helps me connect into the world which understands my situation and enables me to try and make progressive change. I am a new person now and the transition was made easier by thoroughly thinking things through and processing what new situations and circumstances meant.

7. Use your grey matter: this is your key asset in response to an impaired body: only your mind can rescue you from poor mental health, not your body. Use it to work out your new relationships, who you need to contact and problem solve and other things that you need to planned for. As Ian Dury said, disability it’s not about being brave it’s about being organised. Read about the social model of disability as it will hope you understand the world that you now live in.