1st -31st March
It is the international cerebral palsy month this month and here in the UK, there are roughly 1 in every 400 people who have this condition, I included. There are roughly 30,000 children with this condition and although the actual condition doesn’t actually change with age the effects of the condition do.
I have written different types of posts on this condition as I actually have it. My aim is to ensure that the condition is recognised properly and we get the help we need, continually throughout our lives as adults. Not just as children learning to live our lives as we exhaust and wear out quicker than the average person.
Throughout my own life, there are things that I should have learned to do. But because of whatever reason I did not. This means that there are things that I wish had learned and am struggling with now. I mention these things in the following posts Life with mixed cerebral palsy and common questions for me because I have written these posts early on I won’t go on about it too much because really what I want to be talking about the positive side of the condition and the how normal we are actually are, despite our differences.
I also want to prove that even though we do have a disability we also suffer the same feelings as anyone else with depression or any other mental illness. This is shown in my posts Urgh! The feeling and Urgh Again just to name a couple. We can also be just as upbeat as anyone else. We also have the same challenges as anyone else in these strange times what with the pandemic which was mentioned in How are you coping in these strange times. As well as dealing with the stress of moving home which is is mentioned in Thank goodness you have a moving date.
This month I want to keep the interest going to prove that we need to be recognised as normal people. One of the most important things that are being missed is that we are being ignored for needing extra help after the change from a child to being an adult. And the Facebook group Cerebral Palsy Adult Advice UK with the charity Adult CP Hub have a petition asking for the continuation of help throughout our lives not just at the beginning as a child teaching us how to do things and then leaving us to it. Which at this point although we may know what to do we may need help doing it. The petition is Care Parity for adults with Cerebral Palsy. I urge you to sign this as a matter of urgency because any adult with the condition will need help despite our wish for normality while dealing with medical situations that are different to a lot of other people.
I’m wanting to do this because a lot of us don’t have a voice and I am one of the lucky ones who are able to speak and give a voice to those who don’t. This goes for every disabled person no matter what disability they have.
I realise that not everyone is not as blindsided by the way that they live but the life of a person with cerebral palsy is just as valuable as those who don’t have a disability no matter what was thought of in the past because what matters now is the future.
In my lifetime I wish to be able to say that cerebral palsy was acknowledged for adults, not just the children who have it. And for all the help we need is given rather than having to battle for every little thing.
What can you do?
Please think about the people who have a disability and may need your help in whatever way. This includes signing the petition Care Parity for adults with Cerebral Palsy and learn more about the condition so that you can perhaps help that person who needs your help rather than give them the help that you think they need.
Because they know what they need better than any other person.