Do I take Sugar?

Whenever there is a news item about people who live with a disability a representative pops up on the telly to speak on their behalf!

Where do these representatives come from?

Who elects them?

Who selects them?

I am very hard of hearing and I have up to 50 absence epileptic fits a day, but I have never, ever, been approached by any organisation purporting to represent my disabilities before they give evidence on my behalf to the National Assembly or Westminster Committees. When I see these people representing me on BBC Democracy Live I wonder how on earth they were selected to speak for me because they haven't got a fucking clue about the realities of living with hearing loss or epilepsy in rural north Wales.

Who are Epilepsy Wales/Epilepsi Cymru? I have lived with epilepsy for 40 years without this organisation ever aproaching me or asking my opinion about epeleptic issues! Apparently Wales Council for the Deaf is a lead organistaion in informing the Assembly about hearing loss issues - sorry for the pun, but as a deaf person, I've never heard from them!

Today's news about the closure of another two Remploy factories in Wales is apparently supported by SCOPE a charity that has grand ideas about some disability utopia, but doesn't have a realistic clue about the realities of living with a disability!

How many people who live with a disability voted for the Scope Representative to "speak for them" in support of a Tory attack on real people whose only chance of a job is in a Remploy factory?

I agree with IDS, most people with a disability can work! Disabled people should have work. Working is a good therapy, but the idea that I can compete in an open jobs market is a total fallacy. Be honest – given the choice of employing a healthy young 17 year old or 50+ deaf epileptic – who would you give the job to?

Sorry SCOPE, but your trendy lefty lovey attitude towards disability doesn't help me!

The only way that I can get a job is if I can get an employer that discriminates in my favour – like Remploy!

The only way that I can be represented is if I am consulted as a disabled person -rather than be represented by the wheelchair pusher who is asked does he take sugar and answers, wrongly, on my behalf - like Scope!


  1. In reality WCD was the major charity in Wales along with the BDA representing welsh deaf/HI people prior to the RNID who came here only a dozen years ago but with London clout, funds, and expertise, quickly sidelined the rest. They are all image. Scope is more 'disability' than hearing loss, but the RNIB Cymru is in fact more strident for welsh with loss of hearing via deaf-blind. RNID/AOHL are now wandering the corridors of Welsh Power at Cardiff Bae, as if they were elected there as well, although too close to politicians to get a grass root view of actual need they thrive on the publicity, I just wish they would thrive on providing support and joining us low-life's instead. I'm aware people with hearing loss DON'T like being allied to 'disabled', but reality suggests we have little choice because of total inaction by established deaf charities. Byddar Cymru is my welsh contribution and listed on this site let me know what you think.

    1. Is it possible some of these representatives really are disabled? Not all disabilites are visible. If they are not, I would agree that they ideally, if not invariably, should be. I remember a programme for deaf viewers in the 1980s which alluded with some sarcasm to dinners held for deaf organisations. Deaf people were not allowed to attend them. They were for those lords and ladies bountiful who 'helped' deaf people. Haven't we moved on from there? Can someone give me some information on this? It's not a rhetorical question. Thank you.

      Marianne Hancock, Abrgavenny