Accessibility Beyond the Physical
Someone said to me today:
"Looking beyond today and next week and the next few months is a bigger job than a family should have to handle alone. As a community, what could we do to help?"
As a family with autism, we have learned to mostly retreat into our family unit. So few people are out there who can and will help, that we have learned to do for ourselves. School helps some. And there are a (very) few places where we can hang out and be our real selves with support from our community. But not many.
But soon we will not be able to form the fence that keeps us in and the badness (along with a great deal of goodness, I'm sure) out. Our children will be adults. They will require input from adult society. School will go away and cease to be any kind of support. We will get old and infirm. And we will die.
We will have to start gathering the resources that will assist our kids. As much as possible, we will teach them to find resources for themselves.
In an ideal world, society will help our children. They will be shown what is available and allowed to choose from an array of services what best suits their needs.
So in this ideal world, what would society look like? We make buildings and public areas accessible (supposedly) for people with physical handicaps such as lack of sight, hearing, mobility. Job places, doctors' offices, schools, courts, groceries, libraries, transportation, stores. We use these places every day. But what about people with developmental disabilities? What happens when you can't begin to figure out what you need, much less how to access it? What happens when you are overwhelmed by sight or sound? What happens when you can hear the words, but they don't make sense? How do you make society accessible for these people?
First, there must be a supervisor. Someone to decide what, if any, guidance must be provided and giving just enough to make life accessible, but not so much that decisions are taken out of the person's hands. Learning must keep going on, with the goal of ever more independence.
Second, there must be opportunities to access everything that a citizen needs to access. Opportunities for work, for shopping, for accessing stores, for learning, for living, for playing and entertainment, for friends and sexual fulfillment.
We, as a society, favor the easy path. We prefer that everyone we deal with, as a shop clerk or a shopper, be able bodied and minded. We find it easiest (and less disconcerting) to not have to wait for processing times in thinking, to have to ask people to repeat themselves when we don't understand, to not have to wait for a communication device to relay the answer. But we also value independence. And all of these things allow for independence. It is certain that the law will have to force society to accept this, because of our base laziness and distaste for 'other.' We must stop letting others speak for people with disabilities, when people can speak for themselves.
Third, there has to be alternatives. Living in an apartment will work for one of my boys, but another will need more supports to stay safe and comfortable. Group homes are out there, but there are not enough and there are not enough choices. Disabilities do not fall neatly into mild and severe. It is not right to apply a small/medium/large approach to people with wildly differing abilities. People may need assistance in cooking, but be able to work reliably.
I looked back at Maslow's hierarchy of needs when I was thinking about this. At the very base is basic bodily functions, but right above that are security of body, health, employment and resources. Above that are family, friends, sexual intimacy. Then comes esteem and self-actualization.
It is very possible for all people to develop esteem and to become the very best they can be. All of us need assistance in propping up parts of those lower levels. It is our DUTY as a society to be the props for people who cannot find their own props. We have not evolved any sort of morality if we don't realize that and act accordingly.
"Looking beyond today and next week and the next few months is a bigger job than a family should have to handle alone. As a community, what could we do to help?"
As a family with autism, we have learned to mostly retreat into our family unit. So few people are out there who can and will help, that we have learned to do for ourselves. School helps some. And there are a (very) few places where we can hang out and be our real selves with support from our community. But not many.
But soon we will not be able to form the fence that keeps us in and the badness (along with a great deal of goodness, I'm sure) out. Our children will be adults. They will require input from adult society. School will go away and cease to be any kind of support. We will get old and infirm. And we will die.
We will have to start gathering the resources that will assist our kids. As much as possible, we will teach them to find resources for themselves.
In an ideal world, society will help our children. They will be shown what is available and allowed to choose from an array of services what best suits their needs.
So in this ideal world, what would society look like? We make buildings and public areas accessible (supposedly) for people with physical handicaps such as lack of sight, hearing, mobility. Job places, doctors' offices, schools, courts, groceries, libraries, transportation, stores. We use these places every day. But what about people with developmental disabilities? What happens when you can't begin to figure out what you need, much less how to access it? What happens when you are overwhelmed by sight or sound? What happens when you can hear the words, but they don't make sense? How do you make society accessible for these people?
First, there must be a supervisor. Someone to decide what, if any, guidance must be provided and giving just enough to make life accessible, but not so much that decisions are taken out of the person's hands. Learning must keep going on, with the goal of ever more independence.
Second, there must be opportunities to access everything that a citizen needs to access. Opportunities for work, for shopping, for accessing stores, for learning, for living, for playing and entertainment, for friends and sexual fulfillment.
We, as a society, favor the easy path. We prefer that everyone we deal with, as a shop clerk or a shopper, be able bodied and minded. We find it easiest (and less disconcerting) to not have to wait for processing times in thinking, to have to ask people to repeat themselves when we don't understand, to not have to wait for a communication device to relay the answer. But we also value independence. And all of these things allow for independence. It is certain that the law will have to force society to accept this, because of our base laziness and distaste for 'other.' We must stop letting others speak for people with disabilities, when people can speak for themselves.
Third, there has to be alternatives. Living in an apartment will work for one of my boys, but another will need more supports to stay safe and comfortable. Group homes are out there, but there are not enough and there are not enough choices. Disabilities do not fall neatly into mild and severe. It is not right to apply a small/medium/large approach to people with wildly differing abilities. People may need assistance in cooking, but be able to work reliably.
I looked back at Maslow's hierarchy of needs when I was thinking about this. At the very base is basic bodily functions, but right above that are security of body, health, employment and resources. Above that are family, friends, sexual intimacy. Then comes esteem and self-actualization.
It is very possible for all people to develop esteem and to become the very best they can be. All of us need assistance in propping up parts of those lower levels. It is our DUTY as a society to be the props for people who cannot find their own props. We have not evolved any sort of morality if we don't realize that and act accordingly.
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