Disability and I: Ailsa Speak

Hi everyone, I am Ailsa… I am the proud owner of Brains on Wheels. Brains on Wheels is my personal blog, where I write about my experiences surrounding my disabilities.

I live with Cerebral Palsy – I wouldn’t say that my disability is that severe because I can do a lot of things and there are people who are worse off than me. Here’s one thing that I can do: I can use my feet to use my computer; I can do this quite easily.
When I was born, I didn’t breathe. I was stillborn, but I was resuscitated, it took the doctors about twenty minutes to resuscitate me. As far as I’m aware I was fine when I was in my mum’s womb, when I came through the birth canal the doctors lost my heartbeat, which is normal, but when I came out, I didn’t breathe. At this point,
the doctors didn’t know whether I would live or not. Then they said I would live, but they didn’t know how long for and what quality of life I would have, and how long I would live for. Finally, they said I would live a decent quality of life, like anyone else.

Around five percent of babies are born on their due date, and I was one of them.
As a result of me not breathing, in that period when my brain didn’t get the oxygen it needed, brain damage occurred. I was on a ventilator for two days; the ventilator took breaths for me by pumping oxygen around my body and into my brain. I had tubes all over me, this was to help me breathe. If I didn’t have the tubes on me, you could never tell that there was anything wrong with me because I was a perfect colour, all the other babies were premature or they had something wrong that was visible.
There were about three stillborn babies on that day, and I was the only one that survived. The doctors gradually turned my life support down so they could find out whether I would breathe on my own, and I did! I came off the ventilator on my sister’s birthday, which was a wonderful birthday present for her.

My type of Cerebral Palsy is called Quadriplegic (affects all four limbs) Athetoid (uncontrollable movements) Cerebral Palsy and it effects every muscle in my body, apart from my heart, luckily. My right arm is affected more than my left, I can hardly use my right arm because my muscle tone is worse in that arm, for example, I have more involuntary movements and my right arm has become weaker over the years as well (I have a feeling that this is because I didn’t use it much when I was younger).

I like to be as independent as possible, but there are some things I need help with.
If you asked me, I’d say I am very lucky to be here today. I aim to raise awareness about disabilities because I feel that it is an important subject for everyone to be aware of. I think so many people just dismiss me because they think they won’t be able to
understand me, or the other way around. There is no doubt that other people feel the same way about this, so I want to help to put a stop to this.

I feel that too many people are afraid to talk about disabilities because they think that they might offend another person, or they might feel awkward talking about it. In my opinion, you have nothing to stop you talking about things and if other people don’t like it, then it’s their problem, not yours. Never be afraid to talk about disabilities or illnesses.
If you don’t talk about it, then it will be even more awkward because you will be for ever thinking about what not to say, and our whole society will become silent when it comes to talking about disabilities and illnesses. If nobody talks about disabilities and illnesses, how are people going to learn?

I run an online petition, which I created to try and help create more activities for physically disabled people who can’t use their hands. It would mean the world to me if you’d help me and a lot of other people by signing and sharing my petition. Let’s see if we can reach this goal and help change opportunities for physically disabled people who have not got use of their hands. A few people have doubted me about being able to keep this up, so let’s prove them wrong!
Sign the petition here. Why hasn’t anyone thought about helping us? Will you help?

People often say that they “feel sorry” for me and that makes me feel unhappy and awkward because I am who I am, and I can’t change that. I don’t want anyone to pity or feel sorry for me just because I have Cerebral Palsy. If I didn’t have C.P., I wouldn’t be the person I am today, and I wouldn’t have met some of the awesome people I know! Also, I doubt very much if I would be a blogger and campaigner either… So, next time you think of feeling sorry for me, please don’t.

Thank you for reading this, I hope to see you again over on my blog. Read more about what I get up to by visiting my blog here. Don’t forget to subscribe to my blog, and follow me on Social Media, too (all of my links are on my blog!
Bye for now.

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