dear fellow survivors, I have been minded for a while to start a thread on this topic, so here goes permit me to think out loud, and I would love to have your thoughts on this. after over two years living with the effects of a significant stroke. I have come to accept that I am a disabled person. I am recognised by law as such, under thhe Equalities Act 2010, and therefore enjoy (not quite the right word) various protections as under one of the protected characteristics. so far so good. but there are more cultural pressures to deal with than asserting ones rights under the law. and this is whatI have been learning in the process of becoming disabled. one is the model of the super cripple. the expectation that an impairment is a challenge that anyone with character should be rousing themselves to overcome . I have struggled with this and I do not deny or diminish the inspiration of those who have overcome adversity, but as someone recently put it there are no olympics for chewing and swallowing. or just plain getting dressed yet for many of us these hidden mundane things takeevery ounce of energy and courage we have, every single day. the lack of understanding in society and the valuing of those who have spectacularly overcome injury in my experience is disabling, and that is partly why I talk about becoming disabled. I do not fit into society as I did before the injury. I am treated differently. sometimes with a kind of well meaning pity that makes me want to throw up. sometimes people want to help me. and I don't know how to turn them down without being rude, and often end up being curt. People sometimes feel they are entitled to touch me or take my arm, or leg to "help" me walk or negotiate getting in or out of a car. at one time any such intervention was very painful. particularly when my weak arm was suffering from subluxation. while this not the case now. these well meaning interventions are totally unwelcome and worse-humiliating. I have also come to be antagonist to that little word "just" as in the toilet is just at the end of the corridor, representing about a half hour struggle to walk that far. so these are just a few ways I am disabled by my community, and made to feel lesser because not able bodied. that's before I even get started on the world of work. I have though found it something of a relief to identify as disabled. my daughter recently came out as gay, and I think I shared a similar sense of relief coming out as disabled. I have only scratched the surface, and I am still learning about this strange new world I have been thrown into without my choice. I still strive to recover function where there is the possibility. but not to become normal whatever that might mean.
I don't know if any of that will make sense to any of you but interested to hear your thoughts.
I love your post. My stroke was in March this year and I have found it difficult to accept that I'm not just going to get up and go back to where I was. In the process of sorting fit note /sick certificate the surgery reception staff want to collect this piece paper. It takes a £15 taxi journey v a stamp.
As I haven’t got any other way of collecting it. My husband is also disabled.
On average it takes 3 phone calls to get the form posted.
Then to claim any benefits I might be entitled to !!!!????? So far I have had to prove I am who I say I am 3 times.
It would appear that to just survive a stroke isn't enough we seem to have to earn our stripes. Sorry! Enough whinging from me.
Hi Tony - good to hear from you again. Thank you for your heartfelt post, many issues eloquently highlighted and food for thought. Some of the phrases you use are exactly the comments my husband makes, 'just' standing up takes so much concentration, but he covers it so well that I forget that it's his reality. It's posts such as yours, and other SS, that have given me a glimpse into your world, but that's all it is. No matter how much I try to get a grip on what is going on for SS I know I'll never get there, but being reminded is a good step - it keeps me grounded, and hopefully stops me being too selfish or careless in my words and actions.
Thank you for continuing to post and taking the time to express your thoughts - you've helped at least one person today, I'm very grateful as I know it will have been an exhausting process. xx
yes it is the continual proving of oneself that gets me annoyed. it is an oppression. not necessarily meant, but a result of the way the able bodiied world works, for those who are able bodied. so in that sense it is political for disabled people.
Just thought of something that is not such an issue. But there was a time in the beginning when it was impossible completing forms, signing forms and writing in general.
Which bit of my arm is paralysed and it is my dominant hand don't they get. As if I would choose not to use my arm and leg for a while.
hi none of us mind the whinging! it stops us from doing it. It would be a good idea to contact the stroke association and get them to put you in touch with a local coordinator who will help you with the fillling in of the forms for claiming benefits. The forms are over 24 pages and I took one look and gave up! but my coordinator was able to help fill them in. They know the wording and mine took me to the assessments as well, which was great. After my sick pay ran out, I was able to claim ESA and because I had paid all my NI contributions I got it automatically, I was advised to claim PIP as well and my coordinator helped with that, and my blue badge. Before my stroke I could have done this myself but after no way. After so many months you no longer need to supply sick notes. We are stroke survivors but things are still made difficult.
Well put Tony, I think we can all understand what you have put as we probably all feel that way at sometime. We are different now post stroke and there is not enough "out there" about stroke and its effects. Everyone knows about heart,cancer, obesity etc, even smoking gets more advertising than what it means to have a stroke and the many problems we have to try to overcome, as you rightly say even getting dressed for most of us is an issue, but unless we stroke survivors tell people nobody knows. Having a stroke should be given as much press as any other health issues. I believe they have talks in schools on different health issues but I have never heard on one on stroke. I would love to go in and tell them how difficult life is post stroke. Well i've had my moan. Best wishes Wendy
Thanks for the ideas! I'm getting universal credit started last week. Waiting for the PIP form and the outcome of my blue badge request. Fingers crossed. ?
yes, I had to sign a wad of forms recently and wondered what provosion there was if you cannot hold a pen, or moveyour arm one of my former colleagues did not Have any hands, i dont know what shedid
My husband hates handwriting - he's not as bad as he thinks, but it causes embarrassment. I insist he signs birthday cards etc but that's about the limit.
You haven't chosen this path, and sometimes these problems can be covered up, but there's no where to hide if writing is part of your job. I wish I was your colleague, I love writing and I'd do all your writing tasks and swap for something of your choice!!
I'm still in Strictly-ville what a great show tonight. xx
Once I was able to hold a pen I have practiced writing for 5 -10 minutes 3 - 4 times a day. It was stressed by my manager as being a vital component of my job. Not really, I think they thought I wouldn't be able to regain this skill. But as shown at my work place assessment back in October I have learnt to write again. Not as neat as before but perfectly legible.
Strictly tonight was the best ever in my opinion. Glad I watched it.
Tomorrow's results show will be interesting I think Graham will go unless he gets loads of his cricketing pal's to vote for him. xx