You spend your childhood like most other children, just a few differences here and there. A few bonuses like having someone there to help with your work when you need it, and going to a group with other girls where you gossip and have afternoon tea. You don’t care that the point of the group is to teach you to speak properly and feed yourself, things you’ll probably never do. Its fun all the same.
One thing you do share with the other children is your belief about what life is like when you “grow up”. You’ll probably go to university, maybe get married and have kids. But the ultimate goal every child has in mind is independence. The day that you move out of home, maybe with friends, and start living YOUR life, the way YOU want to.
What you forget is how much your parents do for you, much more than the parents of the other children. Every time you need a drink, or want a DVD changed, or need a book opened for homework. They do it all. And somehow you believe you’ll be able to do it on your own when you’re an adult, or someone will be there to do it. You’ll be looked after and taken care of, and you’ll still have the independence you dream about.
Typically, life doesn’t turn out the way you think it will. You expect that. What you don’t expect, however, is to be looked upon as a serial number. To have to beg to be provided with just a couple of extra hours of funding for carers. You certainly don’t expect your parents to have to “relinquish” care of you so that you can move out of home and they can start living their own lives again. You expect to be looked at as an individual with your own talents, likes, dislikes, and every individual aspect of a person, not something that costs too much to be looked after.
So then you start wondering why you’re here. You don’t want to burden others with looking after you. Are you really worth it? The money, the time, the obvious hassle? The answer should be yes. And it’s not fair that people should have to wonder, or that parents should be worried whether their children will be given the opportunity to succeed or the basic assistance they need to survive. The government wastes so much money on things that are not needed and forgets about the parents who are literally killing themselves to support their children with disabilities.
It’s not fair, and it needs to change. NOW!
Tess
