For quite some time it has bugged me how disability has been ignored, not discussed or even asked about. Also how disability is withing the LGBT Community, a minority within a minority. I feel a lot of people, in general, see me and jump to their own conclusions about what they think they see as opposed to asking if I would having a conversation about it.
I am sure a lot of people, from every walk of life can relate to being out and about and someone asking “how are you”? What gets me is before you can answer that person, they are gone! I mean if you are not going to hang around for the answer, why ask? Imagine going into a shop and being asked “how may I help you? So then you start asking for what you want, and halfway through the shop assistant goes on their lunch!
So I have decided, in the age of the internet this blog entry is going to be about my disability.
First off I should state my obvious disability is completely a physical one and is called “Cerebral Palsy”, CP for short. I will write how CP affects me as there are many different types of it.
CP is not a disease or an illness but a physical impairment affecting muscle control and movement. A person/child with cerebral palsy has difficulty controlling movement and posture; they may have problems walking, talking, eating and playing.
I have nearly all my movements under control, my posture is great, fantastic really. I learned to walk when I was 9 and it improves with practice, I only use the wheelchair when I have to like going out and about on my own I have two, a powered one, johnny 5 and the manual, the batmobele.
Cerebral palsy does not get worse over time. There are different causes of cp, the majority of cases are due to negligence just before, during or shortly after birth. I have CP because I wasn't delivered fast enough and could have been and the cord was around my neck 3 times, so there was lack of oxygen to my brain.
Children with CP have damage to the part of the brain that controls muscle tone and movement. Muscle tone may be too tight (hypertonia) or too loose (hypotonia) or mixed. Infants with CP are often slow to reach developmental milestones such as learning to roll over, sitting, crawling and walking.
| The type of cerebral palsy I have is Dyskinesia. This refers to involuntary writhing-like movements that cause severe disability. It is also called choreiform or athetoid movement. Now I don’t consider my disability severe, but according to the medics I shouldn’t be as good as I actually am. Muscle tone in people with dyskinesia is variable i.e. too tight at times and too loose at other times. They have trouble sitting upright or walking. - apparently I have this one. I have involuntary movements but they are practically always under control, although at times my right hand/arm goes crazy. Oh and I am a professional dancer too. |
| Others things associated with Cerebral Palsy are |
Talking is difficult if control of the muscles in the lips, jaw, tongue and other muscles involved in speech is affected. - apparently my lower jaw is paralysed, makes no sense to me. always thought paralysed meant feck all movement, yet I can talk, you might figure that one.
Eating difficulties may arise because of problems with biting, chewing and swallowing. There may be poor growth due to inadequate nutrition. If the child has difficulty closing his mouth he may have a problem with drooling. - Again this is relevant I cut up my food and have mastered the art of chewing, oh I may need a hand to cut up my grub, I do gag at times, usually brushing my teeth, not very sexy.
Epilepsy occurs in about thirty to fifty percent of children with cerebral palsy. – I was one of those fifty percent, but grew out of it and am not on any medication at all.
Right that’s kind of the scientific way CP effects me. Now the social way, yes nearly all people if not all people with all disabilities tend to like to have a social life and be treated with general manners and respect.
I personally enjoy good conversation, a few drinks, dancing, shopping, DIY, photography to mention but a few. As I am Irish, and live in Ireland a huge part of our culture is socialise in pubs and clubs. This can be difficult at times, there are very few places completely accessible. I also find it difficult in Cork more so to find friends who will actually meet other places then a pub. It can be difficult to socialise. Before going out I have considerations to take into account. If going out on my own the venue I choose must have an accessible toilet, if it doesn’t it means I am either coming from somewhere that had and am only having a drink before hitting the road, or I am going somewhere else I can access a loo. I do have to say I feel somewhat lucky that I can hop out of my chair and walk with the lend of an arm to access events, especially within the gay community which are up stairs. Even though I don’t agree with the lack of thought and funding which causes inaccessibility, where possible, I try not to isolate myself any more than I have to, so I walk up the stairs of venues and sometimes just have one drink for the night so the toilet isn’t required. On the other hand.a woman in her 30’s living in Ireland should not have to do that, should she? Should anyone?
