You may have arrived here either because you are curious. Maybe you consider yourself to be disabled? Or will soon be as a result of a diagnosis or have a developing health problem. Whatever the reason, you’re welcome here and if this is right for you. Hopefully, we can help you in your journey.
Starting Your Journey with Disability
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 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. As quite an image-conscious person, 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? Anyway, 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:
What I Wish I Knew at the Start
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 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.
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.
Funding & Support: Getting What You Need
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.
- 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 of free parking on double yellow lines.
- 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.
- If you’re working, get onto Access To Work. If you’re not, get onto PIP.
Adjusting to Life of Disability
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 the barriers that you come across in everyday 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 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.
Relationships, Identity & Finding Your Community
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. 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. I found family visits difficult, as I felt they were a measure of my progression into disability. I did not like how they looked at me when they saw me. So I had to protect myself from that.
- My relationship with people in my community changed. There was a degree of embarrassment about how I was appearing to people, either on crutches or in different wheelchairs. 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.
Reclaiming Independence & Control
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 had to speak out on behalf of others. People 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. This enables me to try and make progressive change.
I am a new person now. The transition was made easier by thoroughly thinking things through. I have been able to process what new situations and circumstances meant.
Final Thoughts: Thriving, Not Just Surviving
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, problem solve, and plan for the future.
As Ian Dury said: “Disability it’s not about being big and brave, it’s about being organised.”
Read about the social model of disability, as it will help you understand the world that you now live in.
If you want to know more about anything we’ve written here, just get in contact.
