I haven’t been posting much lately because I don’t have a lot to add. Almost seven years have elapsed since Shell laid me off, and my struggle to even win interviews has already been documented here. I hate boring people with the same old thing. And, on the Xpress It front, the situation is that any further development will probably be solely personal, because I can find no real interest in the rehab community where it would have to exist as a product. There’s a saying that perception is reality, and the AAC community clearly perceives that the current offerings are “good enough.” My own experience says otherwise, but they don’t see it that way. Unfortunately, I simply don’t have the finances to campaign to change that perception.
So I have to admit that there are days when finding a reason to get out of bed is a challenge. I’ve been out of the IT industry long enough that I can’t even do volunteer work if I wanted to. Yes, I could knock the rust off, but no employer would wait for that to happen. A former friend warned me that I’d be lost without a job, and she was right. Not that I’m the type to do volunteer work; I believe that career-related skills warrant some compensation, but that can come in many forms.
In any event, what I want to talk about today is the loneliness that comes with a “severe” disability. I could get annoyingly extenstential and observe that loneliness is a part of the human condition. True, but having a severe disability, especially one that compromises communication, will make loneliness just about a constant. Curiously, I have been contacted by several women seeking better AAC for their disabled sons. During the ensuing conversations, it came out that these moms were really trying to decide if it was better to prepare their sons for reality or try to somehow provide for the future so the child never needs to face the world. I dodge the question somewhat if I’m asked for an opinion, because I can’t fault these mothers for wanting to protect their children. However, the truth is that even the most basic care is so expensive over a lifetime that a huge pile of money would be needed to give the person any independence without them earning any income. The sad fact is that most severely disabled live in so-called “group homes” under the supervision of caregivers. That’s not living in my opinion, only existence.
I don’t know how a verbally-impaired person with at least minimal mental function could get through life without battling loneliness. I held a salaried position in a major corporation outside the medical/rehab field for 14 years, and have been married twice. That says you can at least get that far, but going further, especially in intimate relations, is quite difficult. The other person in the relationship is forced to come to terms with all the ramifications of the disability. This is what basically killed my first marriage, and I still miss my first wife. Inside, I am a normal guy with all the usual needs, but I have come to realize in the past few years that I don’t have enough to offer to a woman—for example—to offset the hassles of my disability.
Having said that, I would still have to tell the mothers I mentioned earlier that they really can’t protect their children from the struggles of life. There was a recent episode of Law & Order that dealt with a twist in one family’s efforts to manage the future of their disabled daughter. They basically wanted to preserve her as “our little angel” by removing her sex organs and any other body parts related to maturation. Now, I didn’t get much detail on the extent of the 9-year-old’s disability, but it stands to reason that, if she had enough mental function to respond to her parents, she would still be extremely lonely if she outlived them. In other words, you really can’t shield children from everything. It is probably a better idea to equip them as well as possible to deal with life’s challenges. Yes, that might include having Xpress It.
Now, I just heard that astronomers are needing volunteer help in processing some data. Let me see what that’s about.