When you are disabled and you contact social services for an assessment of your care needs, they come and ask lots of personal and intrusive questions about all aspects of your life to see where help is required.
For me, they have focussed on the personal care needs, but because I am married assumed that my husband takes me out places so I don't need anyone to assist me with that (I would love someone to assist me in going to the shops or a cafe without my whole family having to go but they don't understand that).
For my friend, her mother is insistant on meeting her personal care needs, so she has funding for a personal assistant to assist her in accessing the community. The role of this PA is to enable my friend to access activities and places of hes choice. They are not there to plan days out for her and then take her along against her will or desires, or to sit in the house with her all day everyday.
My friend longs for her independence and loves every second she gets where she can truly be listened to and relax without anyone watching over her shoulder. She has a great relationship with her PA and she has been lucky to have the same PA for several years now, but as she pushes for independence, she is met with passively aggressive responses and guilt trips about not doing other things she has always done, such as seeing her PA's family members. If you actually take the time to talk to her, she is more than happy to see these family members and friends, just not every week and not when there is something else she would rather do.
I see that as a healthy perspective and a balanced life. She is not being entirely pushy about her rights and the role of the As, she is being understanding of the relationships she has had with these people and the needs of the PA to maintain them too, but also wants to meet up with us and go to other places aswell.
I don't feel sorry for her, I think she is an awesome woman with a great outlook on life. Her memory is better than mine and her homelife is very similar to that which I had growing up. I was fortunate enough to be an able-bod earlier in life so I could move out from the family home, whereas she hasn't been able to do that. There are options out there for if she decided to go that way, but i know she wants to stay at home for now.
She always wants to try new things, knows everything because, like me, she listens to what's going on around her, attracts attention - both desired and undesired- because people feel the need to talk at her and remains positive throughout it all, with a large group of male friends to chat to online when needs be.
I do feel frustrated for her when I see how muchs he wants to be alone, without a parent or a PA, truly able to make her own decisions and spend time doing what she wants to do, and that isn't listened to.
It leaves me questioning the true benefits of having a PA and whether social services should spend more time truly listening to what people want to do, rather than assuming all wheelchair users are the same and need the same things. I am certain they would be able to shave substantial money off the social services budget that way.
But then that would require human, compassionate and empathetic social workers and that is sadly not our experiene of them.
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