I’ve noticed a trend lately in our little neck of the woods. I’m seeing residents of the local supported living/rehabilitation centers out in public. I’m seeing it here in our small town (we have a supported living/rehab center here), and I’m seeing it in Austin too. This is new. These are the people our culture has deemed as unable to function in society due to their cognitive disabilities. So they live within their living center, few visitors in, no residents out. Convenient, eh?
They have as much right to visit the grocery store, check out books in the library, enjoy our parks and recreation, shop at Half Price Books as we do. Convenient or not, whether they are visible or not, they are the most vulnerable members of our society, and we need to make sure we’re doing right by them.
(For the record, the group I saw at Half Price Books made me very sad. Their escort had them sitting in the chairs that lined the wall, and no one was being allowed to look through the books. They were basically being babysat. I can only hope this was their first time out and the facility is very slowly and purposefully moving them towards being able to walk around the store and browse.) By all appearances, the trip out into the community was a sham.
Honestly, and I hope I don’t lose anyone here, the first time I saw the group from the center in the children’s section of the library (these are adults, not children), my first thought was, Oh, great, I can’t leave my children around these people unsupervised, and I really need to go look at books. (Usually I feel safe leaving my older children to roam the aisles.) I had no reason to fear these people, but I recognize they may have unpredictable behavior. Hmm. So because I’m inconvenienced, I’m irritated.
So I stayed in the children’s section (staying and keeping an eye on my children – what a concept!), and when one of the adults pointed to a stuffed animal, I looked him in the eye and asked him about it. Connection. What did it cost me to stay and be fully present in the situation? Oh, about ten minutes and a few books.
Did my children see me being friendly to this precious child of God? I doubt it. But if I’m consistent in my actions and attitudes, they’ll catch on.
More is caught than taught.
1 in 88 children is diagnosed in this country with autism. These children are going to grow up, and hopefully most of them will be able to live independently. But what about those who are not? If we continue to lock away our special needs population once they reach adulthood, we will have a large segment of a generation of adults who are totally dependent on residential care and who are missing from our general population. If you take a child, even a difficult child out of a family, that family is no longer whole, it is missing something. No one would say that that is a good option when dealing with a family member with a difficulty. Necessary sometimes, well, occasionally, but only as a last resort, right?
If we take the members of our society, no matter how special their needs are, out of circulation of our society, we lose. Every person on this planet contributes to making it what it is; that includes people with autism, Down syndrome, cerebral palsy, brain damage, strokes, etc. If you know a person with a developmental or cognitive disability, you know how very special and precious they are to the people around them. You know how knowing someone with special needs has changed you for the better. You see more clearly, act more compassionately, judge less harshly, feel more loving. All good things, all things that our society needs to help us rise above our me-first, plugged-in, tuned out, mindset.
Before we can change the way our society is operating in terms of its most vulnerable citizens, we first have to change the way we think.
After hearing the abuse horror stories involving the Texas State School (the state-funded rehabilitation and assisted living center) a few years ago, I was very much opposed to the idea of a state-run home. The Texas State School changed its policies (and its name), and I had the opportunity to attend a function there recently. No doubt they only allowed their highest functioning residents to mingle, but it occurred to me that many of those people are probably better off living there than they would be with their families. Let’s face it, while some of us would be willing to sacrifice our own life to attend to a family member with extreme cognitive delays, most of us would, at least eventually, be content with just getting that person through the day. We’d feed them, bathe them, dress them, and then put them in front of the TV.
It’s a lot of work giving a child all the educational, social, physical and mental stimulation they need, but we know that’s going to come to an end at age 18 or so. Plus, kids are cute and say funny things, so we get a lot in return. A 30-year-old who needs his diaper changed is just not cute anymore. We have to dig a little deeper to find the joy and satisfaction that comes from taking care of another human being. It’s a lot harder to set up regular social, educational and physical opportunities for an adult with special needs, and then you have to add in their transportation needs.
So for families who cannot adequately support a member with devastating special needs, I am glad there are state-run facilities where arts and crafts, physical exercise, social pragmatic skills, daily living skills, personal hygiene are all taught and practiced. I hope they visit their loved one frequently and take them home and into mainstream society frequently. The residents may be far happier than they would be somewhere more organic. But we can’t forget about them. We can’t ignore that they are a part of us, as much as our arm is part of us. If we cut them off, we damage ourselves.
And if we desire to provide the care for our loved one with special needs once they reach adulthood, we need the support and encouragement of the people around us. We need to stop relying on the government to provide us with respite, and instead we need our churches, family members and neighbors to offer their respite care for an occasional weekend or night out. Not because it’s necessary, but because they recognize we are caring for a member not just of our family but we are caring for a member of a bigger family, a family we all belong to with some members having more responsibilities than others, the family that makes up humanity.
Where to start: As holidays come and you start thinking about service projects or caroling, add your local rehab and living center to your list of recipients. If you see some of these residents out on day trips, first, make an effort to speak with them. Be friendly. Next, find out where they are from, and email the center and tell them you saw them out in public and you want to know how you can help. Perhaps you can volunteer at the library on the days they come to visit. Be creative, and be friendly, the way you’d want someone to be if it was your child in that home.