International Day of Disabled Persons – A group of a billion unique people

Being disabled makes me a member of a club of a billion people, we are different, and we are not the same, we may have the same condition but the way it affects us is very indvial. I know my challenges are different to a full-time wheelchair user, but as an ambulatory wheelchair user I am aware of the challenges, in some ways I think it can do things, but in my wheelchair if I’m tired, twisted my leg and have an injury or there’s a lot of sustained walking I can feel a bit frustrating.

I know I shouldn’t feel like that, but after leaving school I found that education geared me up for a world which wasn’t suited because of my disability when it came to finding a paid job. This still affects me though I have found ways of doing almost everything I have wanted to do within reason, I know what I can and can’t do, its not for you to tell me.

As a disabled person, I believe it gives me a different perspective on the world, we naturally need to be creative to get things done. Think about any task, think how you would do that when you are unsteady on your feet, tired, late at night that what a good day can be for me. My CP, does get worst when I get tired because my balance and coordination.

I know I’ll need lifelong personal care, which my parents won’t be able to give me forever and when I find a man, I don’t want him to feel as he needs to ‘look after’ my care needs. I try not to think about my care and support needs, I couldn’t function properly without support, but its something I have to think about.

But when you look at the cost of care, most of the images and talk you see in the media tends to focus and imaging is around elderly, when figures from the NHS show its just under 50% of government funding goes on working age people, mainly learning disabilities followed by physical support.

But in the western and developed world we are lucky, there are various support schemes, the NHS and social care in the UK to support us, regardless of being able to work you still can access benefits. We I think as a society need to have a conversation about the types of benefits there are, support benefits for disabled, the elderly and parents given based not on whether you are working, and out of work.

Though in the UK our social care does need reform, I don’t think this article is the right place to talk and explore that big and complex subject.

The pandemic for some people has taken away the support structure that some rely on, I’m lucky my support structure is largely based on family and friends. While my parents managed to care for me through out I feared sometimes

The cost of being disabled is £583 extra a month, with a £100 of what an abled bodied person would have being worth £68, this according to Scope. My costs as I started to go out again in recent months have gone up, as being high risk with Covid, and my local council moving my bus stop further away made town difficult to access.

Many disabled people and their friends/family don’t think or talk about ‘this is because you’re disabled,’ as it becomes normal for us. That makes things like being assessed for benefits difficult, and also depressing as it makes you think ‘what do other people do for me which other people my age don’t need doing for them?’

I think for me, one of the hardest questions when I’m on my crutches is things like ‘what accident have you had?’ assuming the crutches are a temporary thing. Also, when children ask ‘mummy, what’s wrong with him?’ I can see the parents struggling between almost ‘is it an injury or is he disabled?’

Sometimes I have lied to strangers because it’s easier than explaining everything, but I do have to admit the younger people are the more likely they are to treat you as a normal person.

I think now that more people like myself are in mainstream education and it helps as children grow up with disabled people. We need to think it’s only really society that disables us, but we are able to do things, in fact I’m very protective of the things I can do and try to stop other people most of the time jumping in. While it can be lovely if things come out ready to eat, being asked if you need help is lovely too.

There are moments, especially during the pandemic, you feel that no one can truly understand what it’s like for you, but there is common ground between people who have in my case physical disabilities. We can share ideas and information to learn from each other, we try to talk about the normal things but also everyday things, we are human, and we have the same dreams, hopes and needs as anyone else.

In the UK we are all aware that’s there a housing crisis, but for disabled people is doubly hard, figures from the EHRC say only 31% of homes are ‘accessible’ as in getting into the property, while only 7% have the basic accessibility feature. 1 in 3 in private rent and 1 in five in social housing live in unsuitable accommodation.

When 13.3m people are disabled, we require somewhere to live on top of the ageing population. I know I require care, and when I find a boyfriend/husband, I don’t want my whole relationship based around my personal care. I often think I have two types of care, the personal care we all have from a partner and the personal care to allow me to look my best and to function with dignity as a human being.

Often, we need to fight the system to get the support we need, you get used to it or you will sink. Disabled people are very strong-willed and good fighters, it can be frustrating not to be listened to and being compared to other people with similar problems. I think ‘you may have this condition but its not the same as someone else.

One of the ironies of the benefits system is, you spend your life trying to live not to let your disability disable you and find ways to do things, but to get PIP you need to prove how disabled you are. That cannot be down to it being a Conservative or Labour government, so I’m told by mum.

1 in 3 people have disability or health challenge, many of which we will never know about. But, if we can do the basic things to make things easier in like shops and like going out without needing to feel like they’re in the way, one of the things which has made it easier for me is contactless and phone payments as it means I don’t need to mess about with my wallet or card.

The other thing I have become more aware of is changing places, while I can use normal toilets, I still need disabled toilets when I need a cubical. But imagine not being able to go because of transferring, Changing Places, is one of the things I have become aware off.

Many standard disabled toilets don’t provide things like changing benches or hoists, and most are too small to accommodate more than one person. It was never nice when I outgrew benches to be changed on the floor, it took me longer to develop control of my bladder and bowels.

I’m lucky that can use normal toilets most of the time, I’m not going to go into when why I use disabled toilets. But we need to remember, often I forget, not everyone’s disability is visible. Having access to safe toilets is a basic human right.

We are lucky that in the UK we have a ‘normal life’ but in many developing countries disabled people struggle to access basic services. The World Bank says that disability may increase the chance of poverty, and that leads to worst health outcomes compared to developed countries.

In every country there is a wage gap between non-disabled people and disabled people, and for disabled people we already know there is a higher cost of living. We are resourceful and creative people; we must be just to find ways of functioning as humans.

If disabled people are to succeed in life, they need the basic support to be able to function as human beings. One of the basic things which we need is the core to all of our lives is a place to live, safe clean water and sanitary conditions to go to the toilet.

‘The disabled club’ is one anyone can join but not by choice, no one choses to be disabled as its hard but at the same time I know nothing else. Surely its all of our responsibility to make things easier for disabled people, many of us don’t see ourselves as disabled or want special treatment.

Whenever I am in my wheelchair as someone who can walk short distances, it can feel frustrating, but as I got older, I’ve found ways of adapting to not need it so much. I have mental notes of benches in town where I can stop, but one of the hardest things I’m still learning to say “no” when I know things are going to be too difficult or too much.

CP fatigue is something we don’t talk about; it was something I only started thinking about through reading a tread on Twitter. I think it’s something I take as just take as part of my life, I get more tired, but I find sleeping regularly for eight hours hard and I’m often up and down going to the bathroom.

But when you are asked to fill in forms for benefits or support, I’m told it can be hard after twenty-eight years to think what you need help for compared to other people your age. Even at times not being able to do simple tasks like cooking, things which you have never been able to, can get you down.

However, getting older and speaking to people, who have lived experience of caring for people and having disabilities, tend to understand more. I wonder if my generation and the ones after will make it easier for people with disabilities? Barriers do still exist but it’s not just the job of disabled people, their family and friends or government, organisations to make things better for disabled people but all of us.

Making things better for disabled people will I believe make things better for all of us.