Quality of Life
Are we Equal?
When we define quality of life for the disabled community we really do not need to look any further in changing the definition from what quality of life means for the non-disabled community. There is a big push now to bring the quality of life up for people with developmental disabilities and really all disabilities. The problem is that the bar has been set so low for so long we have a long way to go.
How do we bring the quality of living up for people with disabilities? Well, in the physical disability world we are doing much better. We have handicapped parking spaces, handicap stalls in the restrooms, and ramps or special sidewalks. We now must look at how we can implement curb cuts to people with developmental disabilities such as autism.
In the developmental disability world, we tend to focus on things that we don’t really need to focus on sometimes with our kids. There are some daily adaptive living skills that we are really going to need to know to have a good quality of life and then there are some daily living skills that we will never need to know to have a good quality of life.
An example is a therapist who spends weeks upon months trying to get a child with autism to tie their own shoes. If you have spent a couple of months trying to teach a child to tie his shoes and it is not working, there’s a pretty good chance there are curb cuts we can find to help him tie his shoe. He can either ask someone to help tie his shoes for him if he is verbal or we could go with a different kind of shoe that doesn’t require tying of the shoes.
There a lot of different options and solutions out here now days for any problem that you might encounter due to a disability. There are just certain things that we would not necessarily attribute to a person’s quality of life.
Do all people with autism need to learn how to cook to have a good quality of life? Probably not, because if they have jobs then they can afford to go out to dinner. If they have social skills, then they will have friends who could help them make something if they ever wanted to try cooking anything.
A person with autism doesn’t necessarily have to be able to cook to enjoy their life because there are a lot of other ways a person with autism could get food if he or she is hungry. On the other hand, a person with autism does need to know how to get and keep a job so that they can afford to buy food so that they can eat and not be homeless.
In this scenario the more important skill was learning job skills, so the person could take care of themselves. Even if someone with autism knows how to cook, if they don’t have a job then how can they afford to buy groceries.
When we are working on improving the quality of life of people with autism and other developmental disabilities one of the first things we like to see is therapist who identify skills that do not have curb cuts. This is because if a life skill has a curb cut to get around it then we can use the curb cut to try and improve the person’s quality of life.
If we cannot identify a curb cut to help the person with a developmental disability meet their needs, then those are the skills that we need therapists to spend all our time working on. The issue that many therapists face is simply the time factor. There isn’t a lot of time to work with people with autism on life skills and social skills. So, when we do work with them we have to be quick at identifying what skills have the most value in life and which skills a person might be able to get by in life without.
Another example is there might be an adult with autism who can solve any mathematics problem in the world. They are so intelligent in math but when they leave school to walk home for the day they do not have the life skill of understanding they need to look both ways before crossing the street. The fact that we can factor a binomial equation does not have any value if we cannot cross the street safely without getting hit.
The chances are the person doesn’t even have a job in a mathematics field and so why on earth would they ever need to know how to factor a binomial equation? In school and in therapy we really need to start looking five to ten years down the road into the future when we are designing individualized education plans and treatment plans for folks on the autism spectrum. We must look at which goals are valuable for the person’s future and which skills will have little to no value in the future for that person.
To answer the question of what quality of life means in the disabled community we must first stop asking that question. We need to begin asking what does quality of life look like for people without disabilities.
Do we want to be known as a society that says a lower bar for what we would define as quality of life for the disabled community than we do the non-disabled community? Shouldn’t people with disabilities be able to experience the same quality of life as people without disabilities? These are all great things to think about when you are working with someone with autism or any disability.
We also need to consider what the individual person with a disability considers to be quality of life. Often, we tend to think we know the answer to other people’s issues in life but, we have little to no understanding of what people are going through. We want the person with a disability to be happy and we can’t base their happiness on what we think happiness is.
Another thing to think about is to self-check yourself to make sure that you aren’t making assumptions about people with disabilities by accident. When you yourself think of what quality of life looks like for someone with a disability due you think it should be the same definition of what you think quality of life looks like for yourself? Or, do you maybe accidentally have a lower bar of what quality of life would look like for someone with a disability because you assume it would be too difficult for them to achieve the same quality of life that you have.
This quality of life issue is a huge topic in the disability community now and one that is not going away anytime soon because we really are passionate people and we care about the lives of people with disabilities just as we do people without disabilities.
The real answer is that when it comes to defining what quality of life is for the disabled community we really do not have to look any further than finding the same definition of what quality of life means for the non-disabled community.