Something I don’t think people who aren’t chronically ill/disabled understand is the constant burden of having to prove you are sick or disabled enough for the various types of help that you need to be able to exist in society.
Many people assume that if you are sick or disabled, you will get the help you need without too much fanfare, I have even heard people say that if you don’t get a particular type of help, that must mean you aren’t sick/disabled enough, as they assume that anyone who qualifies will get it automatically, but this simply isn’t the case.
There are so many types of help disabled people have to apply for, and for all of them the burden is on us to prove we are “disabled enough” to qualify, and if for any reason the people in charge of the scheme or benefit don’t agree with you, you just don’t get awarded.
Just recently I have experienced this. I won’t name the company, but I have been a holder of a document that helps you access facilities when you book or attend things such as gigs, festivals, amusement parks and more. It is well recognised and a lot of companies trust it, so a lot of places will as for it to prove you are eligible for the help you are asking for.
I have been using this document for six years. When you apply, you tell them what help you need, and they look at the application and your evidence, and decide if they agree. They then put symbols on the document to let venues etc know what help you require.
The first time I applied, I got all the symbols I asked for, without any issues. When the card needed renewing, I sent the same evidence again, as it was still in date, but this time they said they couldn’t issue one of the symbols, which was to show that I needed a carer. I contacted them and they told me their policies had changed, and that I needed a more specific letter proving I needed help while out that was more than a friend would normally provide.
I got a letter from my GP stating that I need help with injections, and that I need help safely getting out in emergencies, communicating and sometimes with other medicines and other miscellaneous tasks that enable me to go out safely. The company agreed that this was a higher need than they would expect a friend to manage, and gave me the carer symbol.
This month, it needed renewing again. I sent off the documents, including the letter stating I need significant help while out, including needing someone to inject me if I am unable to do it. I also added newer documents from my neurologist that showed my diagnoses, and a copy of my oxygen prescription. Again they came back and said they could not issue the carer symbol. I have emailed back and I am waiting for a response.
Keep in mind the evidence I gave is the evidence they specifically asked me for. There is a charge for the document, and, if I was to go back to my GP and get another statement of fact letter then I would be charged for that too. That isn’t something I can afford every time the document needs to be renewed.
Without the carer symbol, I have to pay for someone to come with me to anything I do, I no longer go out alone unless there is no choice (i.e when I go to hospital via ambulance transport). I cannot go to a gig, or the cinema, or a museum, or a normal doctors appointment by myself any more. The last time I tried it ended in extreme pain and being unable to cope. This places yet another financial and emotional burden on me. If I can’t afford to pay for someone to come with me, then I can’t afford to go at all.
I totally understand that things like this document, and benefits and blue badges etc need to be protected. If they are given to anyone who asks for one, they will loose credibility, but, as a disabled person, it is very hard to keep proving yourself, especially if the goal posts keep being moved. Each time I have applied to renew this document they have changed the requirements for evidence, making it impossible to keep up with and forcing me to pay for more documents I will probably only use once.
This isn’t an isolated incident, so many companies and government schemes do this. They say it’s to make sure the right people get help, and I am sure thats part of it, but the reality is that people who need the help are also being shut out. I cannot afford to keep paying for more evidence, so I am shut out of so many things that are supposed to help me.
Then there’s the emotional toll of constantly feeling like you aren’t “disabled enough” every time you get turned down. It makes you feel like you don’t deserve the support, like there’s some sort of competition and you lost, and this is a constant part of the lives of disabled people.
Another thing people don’t realise is that this doesn’t just happen to people with temporary illnesses or disabilities. I have multiple permanent illnesses and even though I have provided evidence of this I am still expected to show new evidence whenever these companies decide. Again, I understand the need to make sure systems aren’t being taken advantage of, and there are some illnesses that get better, or where treatment will minimise symptoms and function can be improved, but if you have been told by your doctors that this is not possible for you, then this should be taken into account when applying for support.
There are many disabled people in financial or social hardship because they were turned down for help that they desperately need, and that needs to be addressed. We need a much better balance between safe guarding these facilities for those that need them, while also making sure that it doesn’t become inaccessible for those who truly need it. The stress and emotional turmoil of these systems has caused me to seriously question applying for many of them and I know I am not alone in this.
Chronic musician 