Hi, my name is trubble!

trubble

hi just read a post  (I think it was about someone being angry about false claims for disability allowance ) and feel the guilt. I am a parent of a now man with cp when he was young we as parents didn't want to tag him with a 'label' and wanted him to lead a 'normal life'.
He is now 31. Still at home with us and works full time. He isn't in our eyes anything but perfect in everything he does. But I know he will never financially be able to get his own place as he gets no benefits and because of his disability not any real chance of bettering his work prospects, it was hard enough for him to get any kind of work. I wish I had registered him as he wont even attempt to do it himself as he sees himself as normal, the way he is !!
i really admire him for that but feel angry he gets nothing at all for his life struggle
sorry for that 
it's out now!

[Deleted User]

Hey @trubble

a big welcome to the community from me

There is a broad spectrum of opinion on here and you'll find that the people chatting have really different perspectives.  I certainly don't agree with everything I read, but I try to remember that it's all informed by lived experience, and all are equally valid.  So please don't feel guilty about anything!

I wanted to reach out to you though, with a few thoughts of my own. 

The stigma around disability is slowly dissipating, and things were quite different 30 years ago to how they are now. Understanding have moved on (almost as much as medicine) but trust me, you aren't by any means alone as parents, in your reluctance to 'label'.  I speak to lots of parents who have made similar choices.  

Your son is working full time - that's a great thing in itself; the employment gap for disabled people is awful (and something Scope works hard to challenge) so for him to have beaten those odds is a big achievement.  However, I heavily empathise with your concerns about career progression; getting disabled people into work is only half the battle.  

There is support out there though, and lots of it isn't means-tested.  If he faces barriers at work, there's Access to Work which can reimburse employers for the cost of equipment, transport, support staff, adaptations etc.  

If his condition means he struggles with the general tasks associated with daily living and/or mobility, he could also claim PIP  (lots of people don't realise you can get this even if you're at work; in fact you could be earning millions and still claim it).  This is because disabled people face extra costs that non-disabled people don't face; PIP is designed to level the financial playing field a little.  

In terms of home ownership; again times have changed.  Benefits used to be considered stable income by lenders; but with changing governments and tighter lending criteria, it's now much harder to get a mortgage if you don't work.  But- your son is working- which greatly improves his chances!  Has he looked into schemes?  Shared ownership / first time buyers etc. 

Just a little note on 'registering' as disabled.... that's not really a thing that exists anymore.  The main way people are 'officially identified' (horrible use of the term but needs must) as disabled is by whether or not they meet the equality act definition of disability.  This says you're disabled if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.  If you meet this definition, you're covered under the equality act 2010.

More practically, to access things like concessionary rates, proof of receipt of PIP is normally fine.  

I can understand that your son might be reluctant to accept the 'label' of disability.   The choice is a very personal one.   However, I'd gently encourage him to consider the social model  as a way of referencing disability within the wider world.  It's not necessarily about condition or impairment; or a judgement on personal ability or potential; it's about where you face barriers and are excluded from society.  This has implications for disabled people as a collective, as well as individuals.  

I'd also like to name check a really interesting piece of research Scope did not long ago with the Extra Costs Commission.  It was mainly looking at the extra costs disabled people face (see my earlier bit about PIP) but there is a particular recommendation that is made to disabled people; to 'positively adopt the identity of disability'.   Here is a slice of the forward:

I have found the work of the Commission enlightening and moving. The stigmatisation of disability that I remember from my childhood in the 1960s and 70s, although now significantly less pervasive, is still having hidden effects. Many disabled people are reluctant to accept the title ‘disabled’ for fear of being labelled by society as being inferior. This is entirely understandable and is a feeling I recognise all too clearly. But I now believe that our reticence to be identified as ‘disabled’ is hampering us and perpetuating the stigma that disability cannot be equated with success. It also means that our collective buying power is not fully recognised – consequently reducing competition for our spending and therefore contributing to higher costs.

I am determined that one of the legacies of the Extra Costs Commission should be that more of the 12 million disabled people in the UK are prepared to adopt the identity of disability and to be ‘bold and loud’’ as consumers.

By doing this, we will counter the stigmatisation of disability and be able to contribute to driving down the extra costs that we face.

Sorry for the long post.  Welcome to the good ship community, glad to have you on board

-B x