Guest post by Josie from Bristol. Josie has a number of impairments which affect her health and mobility; she uses a powered wheelchair. She is sharing her story as part of our 100 Days, 100 Stories campaign.
In 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.
I then suddenly developed idiopathic anaphylaxis – life-threatening allergic reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.
My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.
I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.
Two days away from the general election, here are three things the next government needs to do to make sure disabled people are better supported.
1. Social care should support us to live, not just to survive
At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean.
My basic needs are met – I’m clean and I’m fed. But I haven’t got any allocated support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.
If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.
I understand why we’re in the position we’re in economically, but I worry that there will be more cuts to social care, and I really can’t see where they are going to come from.
2. Remember that benefits are people’s lifeline
There’s nothing in my life that can be cut. Every penny that comes in goes back out, and I have to budget very carefully. There’s no ‘fat to trim’, as politicians like to say.
If, for example, my benefits were taxed, the money would come out of my food budget. I wouldn’t be able to afford online delivery for my shopping – I’d have to send a support worker, and miss a meal or a shower.
There’s a belief among some people that many disabled people don’t want to work, or choose not to. In fact, it’s the exact opposite. I didn’t choose to get ill, I didn’t choose to become disabled. I actually found it very difficult to come to terms with the idea of claiming benefits.
Soon I’ll be reassessed for Personal Independence Payment (PIP), and I’ll have to justify myself again – there’s always a huge fear that what I have will be taken away.
3. Disabled people deserve a role in society
A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!
The loss of the Independent Living Fund has been a blow – people like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.
Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.
I’ve watched a lot of political debates such as Question Time over the past few years, and I haven’t seen a single person speak who uses social care. There have been a few family members, which is good, but disabled people should have a chance to speak for themselves.
A question of equality
In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.
I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead I don’t feel like I’m living, just existing.
Politicians should look at my situation and ask themselves: “Would I be prepared to live like that?” And if the answer is no, they should be ready to make changes.
Josie runs a website offering support to people with idiopathic anaphylaxis at www.iamast.com