So the ‘cuts’ seem to be having a particularly negative impact on the lives of disabled people. I was faced with the magnitude of this potential impact about 18 months ago when my live-in care was nearly taken away from me within the space of one swift phone call.
I was told that the manager, after reading my review that the social worker had written up, had said ‘well lots of people in the community have arthritis that don’t have live-in care so why is this girl getting it?’. I obviously retorted that they aren’t as bad as me; wheelchair bound and virtually every joint in my body working to about 20% of its capacity. I tried to explain over the phone my limitations and how far I could reach etc…to which the response was ‘but you said you play Table Tennis, so if your arms are so bad how come you can still do this?’ I was horrified by the ignorance shown and welcomed them to come and watch me play and see that I won’t suddenly be stretching right over the table and running rings around it! In the year of the greatest Paralympics being held in our home town, to then have the fact that I try to still play sport be used against me, was astonishing!
Wondering how on earth I was going to cope without live-in care, I was told I could have daily care where I would have a ‘breakfast call’ to get me up in the morning, probably a ‘lunch-time’ call, and then a ‘tea time’ call to give me dinner and put me to bed. Now I know what this means.. a call no later than 8 or 9pm..so say good bye to any social life..and I currently lead a very active one, meeting friends most evenings and going to bed fairly late. Another alternative gently suggested to me would be to live in a ‘care home’……. My freedom, choice and independence was seemingly teetering on the edge of a cliff.
Then the biggest bomb-shell of all.. ‘How will I toilet through the day if my carer only comes at set times?’ I said. ‘Have you ever considered using nappies?’ Er, NO!!!!!!! because I am fully continent and 32 years old so, no, the thought of gratuitously wetting myself hadn’t really occurred to me funnily enough.. By this time in the phone call, liquid WAS gratuitously being released from my body, but from my tear ducts. I was distraught – could my ‘relatively normal’ life just be taken away from me like this? I felt so vulnerable and powerless I cannot tell you. Also very frightened.
Being disabled, we don’t have the freedom of choices that our able-bodied friends do..such as which houses we can rent/buy, where we can go on holiday, access to buildings, hotels, transport, pathways, toilets etc. Every day we have to plan and be aware where we can go – its hard to be spontaneous .. Fortunately, we live in a country that does (usually) support us, alleviating some of the major stress of living with a disability by having people to help and care for us. With the threat of this being taken away, I now felt like a ‘Nobody’ and utterly helpless with my life being in the hands of some grey-suit that would never actually meet ME and respect the life I have carved out for myself which has taken a lot of adjusting to, mentally and physically.
There has been so much progress with disability awareness and giving disabled people their independence back, with suitable housing, access to work and schemes such as Motability to enable us to drive again that it seems so backwards taking this all away from us and potentially institutionalising us in care homes (such an archaic attitude of ‘keep them away from society’!!) or leave us house bound in our own homes. I cannot get in my car on my own, I cannot wheel myself long distances to get further than my own driveway, I cannot reach into cupboards to make a snack or a meal and cannot pick up things I have dropped. So with their plan of action I would have to have been housebound, waiting for the thrice daily visit from a RUSHED carer, just staring at a tv, unable to plan meeting my friends or going to my hobbies in the evenings… oh and just sitting there wetting my pants. Sounds ideal doesnt it?
Fortunately, as I have a brain and the support of friends and family, I was able to write a 4000 word document explaining exactly why I need 24 hour care. My social worker, once properly recognising my situation, was very supportive in presenting my case to the Appeals Panel where they also agreed I should keep my care. I feel for the people that would just accept what had been given to them and not have the wherewithal to defend themselves. Where would they be now?
Zoe Lloyd
Your blog is certainly very powerful! I remember at the time how distraught and angry you were, how dare they try and take your Independence away from you, it really would have been unjustified. Since her illness I have seen so much positive change in Zoe; confidence, social life through to working a few hours a week and of course driving her car! Zoe is a strong minded person but I do feel for those people who are not able to voice/express themselves….We need keep making everyone aware!