Advocacy

As an adult with disabilities, I have been advocating for myself for a long time now. I arrange all my own carers and deal with my case manager (person who controls the funds that help pay for the carers and for some of my other needs in relation to my disabilities). That’s why I am amazed that my parents received a letter in the mail stating that the coordinator of the carers has changed and including all the new person’s details. Now it may not seem like a big deal but to me it stripped away my power and made me dependent on my parents to advocate for me the way they did when I was a child. To a certain extent it also stripped me of my rights as an adult and an individual. To be fair, many of the clients of the agency are children, but I still would have liked to have been recognised.

In health news I must advocate for myself once again. The medical mystery is no longer a mystery. I have been diagnosed with Vasculitis. Basically Vasculitis is an inflamation of the blood vessels that can affect any part of the body and cause organ damage. The good news is it is treatable with steriods and possibly immune suppressent medication. I may also need medication to deal with the side effects of the steriods etc and also to deal with the damage that has been done to my body in the last 3 and a half years of searching for answers. So now I must advocate for the right doctors and medications to treat the vasculitis, all while maintaining a balance of my needs in relation to the Cerebral Palsy and trying to maintain a ‘normal’ life. Wish me luck!

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3 Responses to “Advocacy”

  1. Glee Says:

    That first para is a shocker Karen and you have every right to be outraged. I had a friend (pwd) who had managed his life and services as a single man for 40 years. He married and the notices were then sent to his wife. He was one of the founders of the service provider org that did this yet they still took his power (or tried to) away from him.

    Unbelievable.

    So you have a bit more to deal with on your plate and it doesn’t sound yummy. Don’t you love the pills you have to take that counteract the effects of the other pills! One could spend all day popping pills to keep them all in control. Crikey.

    cheers
    Glee

  2. Rebekah Says:

    It is so great that you make your advocacy such a priority – so many people would just sit back, complain about their situation, and let others deal with it for them. Your strength on this issue is a great asset.

    Since you posted in my original post about it, I’m letting you know it’s time to wrap up the Summer Reading Groupies! Come by my blog to share what you read this summer.

  3. Emma Says:

    I seriously would write a letter of complaint about this. If you want help to do so or someone to bounce ideas off of let me know. It’s the complete opposite of a story I once heard – a care org. once sent a letter to a guy with learning difficulties who couldn’t read/write/speak and refused to speak with his parents when they called. As an acquaintance said earlier about something else “nothing surprises me about this world any more.” Only I don’t think I’d say nothing, but certainly very little. (((hugs)))

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