FanjoForTheMammaries
YouTheCat
FreudiansSlipper
AllThatGlistens
Thank you for your human kindness last night. You may not see this buried here on this thread, may start another.
People don't have a clue what's its like to be disabled, and it's so hard to educate people because it involves challenging so many assumptions and 'truths'.
It's uncomfortable to understand what other people have to endure, and it's uncomfortable not to be able to blame them, or someone or something else. It's uncomfortable to understand that we aren't in control or protected against disability. So people choose not to learn.
And then cannot admit that uncomfortable truth that they might be part of the problem, so really defend themselves with all the vigour of guilt.
I can't even begin to describe how hard my life is, and how every day is like running a marathon or climbing a mountain, not in a satisfying achievement of a lifetime way, but in a gruelling, endurance draining way. And then you have to do it all over again the next day.That's when death seems a hell of a lot easier than this hell that never lets up. But you can't and you have to carry on in this silent solitary hell, clutching at the tiny slivers of good and hoping somehow they get bigger.
And on top of that constantly come up against people's beliefs about what disabled people should do/ be like/ want and deserve. And have to weigh up how much you have to give in and let other people control and constrain your life, or dent your self esteem, or try and address it and get blank incomprehension, or aggression and hatred come back your way.
I can't go to a cinema btw, I did try and go to a fashion show once and someone trod on my ankle and swore at me, then someone else pushed me down the stairs cos I was going too slowly for them. They wouldn't even remember the incidents, I was too embarrassed and hurt and ashamed to take them to task about it. But I remember and it made its mark on me, physically and mentally. I'm sure people here will say I shouldn't have been out though. My fault.
It's not even like that incident was a major thing in my life, just part of the continual reminders that you don't belong in the world any longer.
Still I battle and I refuse to become the lowest of what I can be, become what society wants me to be. So dont get me wrong, compared to many, I am bloody 'successful' for a cripple anyway. But it doesn't stop the hurt, and the fear, and the loneliness.
What you wonderful mums of children with a disability do ... You are amazing. You are helping your children grow up equipped to deal with the world (as much as possible). Your children will know they are not alone, because you are there, and never underestimate that. Obviously I'm grown up now, have been for a long time, but my parents were too embarrassed by my sisters disability to ever fight for her, to help her through life, to ever admit how ill she was. When I got ill too as an adult, they'd rather ignore me than admit the double tragedy in their lives. I believe that you are giving your kids something truly precious by being there for them.