Shielding a child with disabilities from life experiences is a sensitive subject. Unfortunately, it is one all too often ignored by many well-meaning parents of children with disabilities. While most of them only want what is best for their children and will go to great lengths to do what they must to protect them, they often do not realize that being over-protective can cause just as many problems as it appears to solve.
Naturally, parents want to protect their children. Many parents of special needs children feel that their children may need more protection than if they didn't have such a diagnosis. To many people, this makes sense and in some circumstances it may be true -- but not always.
In an effort to protect their children, some parents will only seek out other disabled children for potential friendships. This is something that was dramatized in a recent episode of NBC's Parenthood. A character in the series Max Braverman (Max Burkholder), is a young man with Asperger's. Max is unable to make friends and is paired with a boy named Micah, who was born with spina bifida and uses a wheelchair. The episode gives viewers the impression that people with disabilities can or should only befriend other people who are disabled. I know this may make sense to a lot of people; however, restricting a disabled child's relationships can have devastating effects on his or her personal development and ability to function in the adult world.
In an effort to make life as comfortable as possible, some parents will seek out special schools, groups, or activities catered to their children, so that they will only have to deal with children who share their disability Obviously, no parents want their children to have to deal with feeling different, being left out or being hurt by questions and curious looks. They don't want their children to deal with the frustration of trying to fit in and not always succeeding. They don't want them to get discouraged, and they don't want life to be any more difficult for them than it already is. In theory, this practice seems like the ideal solution. In reality, it can have devastating effects.
Part of being a human being is learning how to navigate one's way through this world, from the cradle to grave. Everyone has to interact with other people - people who may be different -- and the better one knows how to do this, the easier it is to steer one's course Without those skills, one has a very difficult time getting through school, having and maintaining meaningful relationships later in life, and gaining and maintaining employment. These are all things that the majority of human beings want out of life. It is our job as parents to give our children the tools necessary to accomplish these goals, regardless of whether the children will be successful in the endeavor.
Everyone has the basic human right to pursue happiness. To do this, children with disabilities need to be exposed to the same life experiences any other kid has. They need to be exposed to a variety of people and situations. The children must learn to deal with anger, disappointment and frustration, just as any other person would. They must also learn how to deal with people who ask questions, including people who may not be comfortable around them or those who act like complete jerks. The child should be given the opportunity to learn how to gauge the appropriate responses to all these things. To deny this is to deny them their basic human rights.
I often ask parents with a disabled child what their plans are when they are no longer alive or able to care for their children. I am mostly met with a blank stare. It is a real concern, because many of these children will end up living in group homes or nursing homes. It is a real shame when you consider how different things would be if the children had been given proper tools to live on their own or with the help of some assistance. This is a much better option, but for them to do this, they have to know how to function as adults.
I started school in the very early 1980s, well before the ADA (Americans with Disabilities Act) ever existed. As much as the ADA has done for so many people, and it is a wonderful thing, I am thankful that it did not exist until my high school years.
I was the only kid in my school with any kind of disability, and although teachers helped me with some things while I still had my full body braces, they didn't have to. My family always taught me how to do for myself. It was the only option there was -- a sink or swim situation. I had to make friends with the "normal" kids because they were the only kids around. I had to learn how to keep up, and when I couldn't, I had to do something else or learn to be a spectator. I did what I could with what I had and moved on.
This was the experience of many that are my age or older than me. It was a different time, and things were done in a different way. I never knew anyone with an aide. I am not saying aides are bad for children and adults who absolutely cannot function without them. In those cases, they are necessary. But, for those who can, even if they have to struggle more than the other kids, it is best to let the children figure out how to do things for themselves.
My son can walk and does not need an aide. Nonetheless, he qualified for one. His diagnosis made it possible for a person to assist him every day at school and do everything for him. I refused to accept the assistance. Even if he could not walk, I would never have allowed him to have an aide. I feel it would have done more harm than good. It would have taught him to rely on others for things he can do himself, even if it takes longer or is more difficult.
When I was in school, I walked with crutches and I carried my own books in a crocheted bag my mother made for me. I was expected to be in class by the time the bell rang, and if I wasn't, I got a tardy slip. Just as I did it then, my son does it now. By the time I got to college, I was ready to face the world, without hesitation and without fear.
The school experiences I have described do not happen as often in the younger generations. There is too much sheltering and too much pity. Pity is a monster that will do nothing but destroy any hope for the development of a healthy state of mind. Pity will cripple people's ability to see children with a disability for the persons they are and not the circumstances they are in. Doubt will destroy those children's dreams, and they will never be given a chance to discover all that they are capable of becoming. Separation only breeds more separation and a lifetime of loneliness.
We as a society need to step back and rethink the view we have of disabled children. People with disabilities are not weak, mentally or physically. If they were, they would not be here in the first place. The parents who are raising these children have to get serious about bringing these children up with the understanding that they can live their lives to the fullest. We all deserve to be what we want, and they deserve the same opportunities that everyone else has.
Everyone needs to understand that although children with disabilities may appear different, there is nothing wrong with them.
Instead of isolating them and projecting our perceived limitations onto them, we should give them the tools they need and let them show us just how strong and capable they really are.
As for those of us who have lived life with a disability or those who are now facing the reality of learning to live with one, it is time to shine. Let's make sure the way is paved for those who come after us. We have to show the parents, the children and the world who we really are. Only then will the public perception change. The public, the media and the government cannot and should not do it for us.