Disabled people, where can we go?

When we look at lists of what disabled people have to help them in life, questions start to spill. What social support do we already have? Is it the support we need? How difficult could it really be to keep us calm when feelings of seclusion find their way?

Seclusion tastes sour

A lot of readers will know how difficult it is to put a claim in for PIP in the UK. When first applying for Personal Independence Payments, you’ve got to write your form well. After that, getting past the next stage of one-to-one questions is even more unstable and often an unfair process to take on.

Now, although the cash you get with PIP will have uses, you won’t exactly align with winning the lottery when you get it. Plus, one mental health fact that most people don’t deny is that money doesn’t lead to happiness. So, if distressed by a lack of social acceptance, what do disabled people need to find their feet?

Right now, I can’t help but believe that finding what’s available just isn’t always comfortable. When you’re disabled and need to interact with others to erase feelings of isolation, it isn’t going to be a simple ride to the finish line.

Helpline advice

Back at university, I might have talked to people via Epilepsy Action’s helpline when my epilepsy stopped me from socialising with others on a regular basis. Epilepsy Society has a helpline too, as well as many other charities that support different disabilities around the world.

However, what levels of connection can you really offer to somebody that you’re speaking to for the first time?

In life, meeting new people to make new friends is an important task for anybody. In my mid-twenties, I also met a group of people with epilepsy alone. There weren’t many of us, but it might well have paved a little progress to finally end my depression at that moment in time.

Since then though, isolation has continued to leave me feeling a little less positive at times as well. It’s one reason I decided to attend workshops and became a member of the GMCDP. I can credit the disabled people’s organisation for helping me to tackle a few feelings of isolation. However, I also started to shift myself to group meetings because I simply wanted to learn a little more about disability too.

I appreciate everything they’ve ever done to inform disabled people and try to tackle issues. However, collaboration with others can’t be exchanged all that often. Not so many members seem to exist, and I don’t feel becoming part of its community is an easy task to take on.

Misunderstanding is out there

The UK’s National Autistic Society recently launched their new Not Enough campaign. It includes the sub-headline: Not Enough Support, Not Enough Services, Not Enough Understanding. I feel this only shows I wasn’t wrong about the current situation in a previous post I wrote about raising awareness of ASD in the UK.

People and carers of people with ASD are certainly not alone either. I know that people don’t often understand epilepsy in detail. So often people only assume seizures are all set off by flashing lights alone and there’s only one type of seizure that people have. However, photosensitive epilepsy only affects 3-5% of people with the condition; epilepsy is much more complicated than people tend to believe.

Although I feel I’ve attained a fair bit of insight about disabled people’s rights, all disabilities are complicated, and there’s more I could know about others as well. I hope knowing that I’m also happy to be educated cuts me some support. By doing so, I’ll only understand more about how other disabled people can be unfairly assaulted by the barriers of isolation existing in society.

New ideas needed

Not so long ago, my focus was more often set on offering assistance to people with epilepsy. However, the patterns of my plans quite clearly took a change. The situation I now find myself in has made me focus on the idea of putting information in an area where it’ll be easy to find. To help us find strength, I think it’s best to look at what we already have.

The disabilities we all acquire are different, but we’ve all got our talents too. We often grow wiser after dealing with difficult times. If disabled people start working with each other, who’s to say we can’t create something superior?

Our current leader

In Britain, Disability Rights UK is our country’s most dominant disabled people’s organisation. However, I can’t claim to have often attended their website, and it’s never been recommended to me by any group or individual. They allow you to subscribe to e-news for free, and you can become a part of the organisation too for £7.50 per year.

There’s no doubt that the idea of being an official member of my own nation’s disabled people’s organisation sounded appealing. And yet, I didn’t even realise it was possible with DRUK until recently. After signing up, I only hoped I’d have some sort of ability to log in to the website, a profile of my own. However, that’s not available. Attending certain meetings is possible, but more often than not I’ll simply receive email updates and a bi-monthly newsletter too.

In my eyes, that’s a lot less access than all disabled people should be entitled to. As mentioned, isolation’s an issue for me and many other disabled people as well. I would have found my way forward in life if I felt I was part of something superior, and something that gave me more opportunities to socialise as well. But Disability Rights UK doesn’t seem to offer much that we’d like to receive.

Group therapy: disability information and organisations

There are a lot of organisations available that help disabled people in a variety of different ways. But finding out where they are and what they do isn’t an easy task. I don’t think anyone can deny that having a headquarters to lead us in the direction of what we’re searching for would be beneficial for many people.

Many charities that support a specific disability exist, so who’s to say we can’t group them together? I’m not saying they’re all the same and we should scrap every website to create just one. However, these websites each have the same intentions: to offer information, advice and support about a disability; to receive donations, gain interests and raise awareness of them too.

Right now, I’d like to see a new website for disabled people. On there, we could give disabled people the chance to create a personal profile, select their disability, and give links to its most relevant charities. As well as giving disabled people the status of being in a group, it could also include information about other disabilities and perhaps encourage others to learn a little more about them as well.

The two disabilities I’ve mentioned today are epilepsy and autism. One other point to possibly mention is that there is a connection between these two disabilities; children with autism are a little more likely to have epilepsy. In fact, many disabilities are related with others, and making disabled people more aware of these relations could be beneficial for them in the future.

New Ideas

Although we don’t have this sort of system up and running yet, I think we can get one going soon. Networking needs to take place, but the more people understand the benefits of grouping up, the better.

Some disabled people and older individuals may not be able to use the service, but I think it’s time we made it available. Close carers of loved ones could always register their details if needed too. There’s a wide variety of useful services we could offer that a lot of disabled people would benefit from online.

In fact, the more services a new website supplies, the better. Wouldn’t non-disabled people get curious if something we appreciated and even enjoyed using online wasn’t available for them to access? If disabled people were the only ones able to sign up to the website, wouldn’t it work well as a barrier against the rest of society?

I think it’s something to think about.

As I’ve previously mentioned, The Disability Issue is a blog that’s looking to exploit new ideas, rather than fret at negative issues. Sign up to the blog today and you’ll receive more information about the ideas that I’ll be looking to help develop in the future.

Images: Phone calls to nowhere by Qwedgeonline / Access by Sarah Stewart / Lights, strobes, people by Atomic Taco