Here are a few points on how I view my disability and what it is like for me to have to have Lifestyle Support Workers to live my life on a day to day basis.
It is who I am – I don’t know any different, I have always been dependant upon others to do physically what I am unable to do for myself. If there were a cure, I would only steal that tiny bit that would make my speech slightly clearer for others to understand me.
I can use my disability to teach others, whether it be directly or indirectly. Turn what is seen as a negative into a positive. A number of people have said to me, “Since I’ve started working with you, I’ll never duck into a disabled parking spot just to go to an ATM.”.
Having to employ Lifestyle Support Workers means that I get to meet a lot of different people from many and various backgrounds. Some I’d love to meet again and others, hopefully my wheelchair speed can outdo their run.
I have made valued life-long friendships with some Lifestyle Support Workers and their families over the years. To me, this is very healthy and normal.
Having to have Lifestyle Support Workers means that complete strangers get to know and see extremely private things such as where I live and my naked body and I know very little about them. Two examples of this is when someone has accepted my verbal offer of employment following successful completion of training and I have provided times, my address and phone number etc and for whatever reason they just don’t show up. Yep! No courtesy phone call, email, nothing! Or when someone does the training and one or two shifts then resign because they “wanted the experience.”. With very little or no consequence to them, I’m left with going through the whole process of advertising, interviewing and training again and having yet another person know intimate details about me. There is no such thing as privacy for me!
I don’t understand why or how some people think/act as if I am some sort of a hero for just living life with a disability. To me, it’s just living life. The fact is, I’m doing exactly what they are doing, living my life. Yes, I do have a disability and society is not always the most accepting which means I live life the way I can. This attitude can be taken to the extreme and therefore comes across as patronising.