Ageing as a disabled person

theme79

OK I’ve been a disabled person virtually all my life and obviously over the years I have come to terms with how society, friends, family whilst often well intended say one thing but do another - or nothing. 

Sadly also it feels, or am just a becoming a grumpy old guy as my wife might say, but it feels like we are sliding back into the bad old days - access and opportunities for inclusion seem to be something that is written in policies and on the tin but in reality all the effort and push required is from us and not automatic. 

Is it that as I age as a disabled person the extra stress in my body and continuing psychological pressure on my resilience is taking its toll? Or are things getting harder and harder for us. I am still working but past retirement age, as a wheelchair user more or less full time and a ventilator user 14 out of 24 hours a day I also now need full time care. That is done by my wife but as I have a flat and am not in poverty (yet!) - she get carers allowance (ha ha ha) hardly the same as job seekers allowance and policed in case she earns any extra in the few hours she isn’t saving the state money by caring for me. Let me not even mention the experience of being in hospital as a disabled person (not related to my impairments) - I used to work in the wards in my 40s - OH MY GOD… they know nothing about having a physically almost quad disabled wheelchair user on a vent !!! We haven’t moved on from the 1990s ! If my wife hadn’t been there more or less 18 hours a day … well not worth thinking about.

anyway sorry for the rant but when even transport into London is awful and parking costs £50-70 a day as access for disabled people even with blue badges is ignored by planners and the green lobby. Ok i am not charged for ulez or congestion charge but what goods that if you can’t park or access anything without paying a fortune? 

I know it’s complex for policy makers and businesses but it isn’t even thought through if it’s a problem - we are as you all know NOT sitting at home watching Netflix and being fed by carers until we slide conveniently off this mortal coil as was the unspoken agenda for sone tune and exposed in all its callousness during the COVID nis management. 

I wonder how much mental ill health and stress is being oiled into our community and at what cost to us, our family and carers. How many of us im are either on medication as a result or if we’re lucky or have the finances seeing a therapist - often if course using CBT which is fine but administered by those who are not trained or understand that our mental health is 75-90% a result of social pressures, lack of inclusion and poverty.

grumpy ? It just frustrated and angry ! Am I alone ? 

Sandy_123

Hi @theme79 welcome to the forum, these things come to try us and try us they do. A lot of the things you mention above will be felt by a lot of members here I'm sure

Jimm_Alumni

I do think the world is very frustrating right now. There are so many in need of help, that are struggling every single day and the help that is offered is barely enough. And you have to jump through so many hoops just to receive that offer.

I can't speak much for getting older, but I understand the frustration even as a younger disabled person.

theme79

I am a little out of the loop these days, but i think one of the things at compounds my frustration is that the positive direct and political movements when i was in my 20s seem to be lacking today. Being unpopular as disabled people doesn't come easily but in the early days action seemed when i reflect more grass roots and rebellious. maybe as the disabled community has expanded to be inclusive of many more diverse definitions we have lost a core sense of political identity, something that perhaps the deaf community has held onto, of course they have a language based cultural identity which perhaps helps. 

My political activism days are over, but am just unaware of the activism of disabled people today? not many wheelchairs blocking road of chaining to busses and inaccessible venues... old fashioned activism maybe alienates as we see in some of the climate change activism. Trouble is it works.. and did work in the early days of disabled peoples independence movement. I guess I wonder where we are now?