This is an article written by Ron from Ron’s Rants about the need for the distinction between those that are “disabled” and those that are “chronically ill AND disabled.” It’s very well written and makes some really good points that I’ve been trying to convey myself to others. Please read the article and share it!!!
There is nothing quite like having a chronic illness and being stuck in a wheelchair that makes a person feel invisible. This sounds like an oxymoron, doesn’t it? But it happens. Having an illness like Ehlers-Danlos Syndrome, with all it’s companions (Dysautonomia/POTS, Osteoporosis, Athritis, etc) changes a person. There’s no way that it couldn’t. We can try to deny that there’s anything wrong, which I did for a while, but it catches up to us. Our bodies turn against us, causing us pain, making us faint and dizzy. There’s nothing we can do to stop it. It’s a degenerative process; it can be gradual or quick, either way it is still degenerative. We use braces and bandages to try to hold our joints together, but those become intolerable to our skin. Sores form and don’t heal well. Then the autonomic nervous system goes haywire causing our blood pressure to drop and our heart rates to become erratic that makes us nauseous and dizzy and unable to breathe properly. Our digestive system is weakened increasing nausea and making it difficult to eat. Before you know it, we start using canes and walkers and then have to make the awful decision to use a wheelchair.
This may happen in a matter of 10yrs, 5yrs, or like in my case just about 18 months to 2yrs. I’m not longer able to do the things I used to do. Last year I made the decision to stay home while most of my friends went on the annual camping trip. I can’t even begin to express how bummed I was. I loved camping. I’ve had to give away bike finally coming to terms with the fact that I will never ride a bike again. I will never be a black belt. One of the worst things, though, is that I can’t do things that my friends do. I can’t go out after dinner and have a few drinks at a bar. I usually can’t handle to stay at parties to long because of pain, or fatigue, or some other symptom. Having a chronic illness is, indeed, isolating. There’s a disconnect between the world most of my friends live in, and my own. It’s sort of like living on the outside of the world my friends live in, but I am unable to reach them, to join in. All that’s left of me in their world is my hand prints. Some days more, but… just my hand prints. I wish I could join…. I really do.
This isn’t the life I would choose for anyone. I’m 27 and supposed to be having the time of my life. Instead of having a career, a house, going out with friends, having fun… My life is full of doctor’s appointments, medical bills, wondering when my new wheelchair will be ready, making sure I take my medication when I’m supposed to. Just when I think I have things figured out, something goes wrong and it’s time for more doctor’s appointment, more tests, more medication. Some days I want to scream out and say that I am not invisible, I exist! Would it make any difference? I suppose not. I will still be in a wheelchair, going to doctor’s appointments, having to leave parties early, taking more medication, etc.
This video is amazing and worth EVERY second spent viewing!
There is so much debate and controversy about Autism Speaks and what they stand for. Personally, I do NOT believe that Autism is a disease that needs to be cured. I believe each autistic person has something to offer to society. Granted, it’s not without its hardships. I’ve worked with Autistics, I know many, I am on the spectrum myself. I know what I am talking about. To say the Autism is a disease, is something that needs a “cure,” is saying as if an Autistic, or me for that matter, is diseased, needs to be cured. Autism is neuro-diversity, a different way of perceiving, of thinking, of seeing the world. Some things don’t come to us easily, but that does not make us any less in value.