Isolation

By Lance McLemore, PRC-Saltillo Blogger

I think this will probably be the most difficult post I’ve written so far. As I write these words, I have no idea if I will have the courage to submit it for publication. I want to talk about the isolation that many AAC users experience and the accompanying loneliness. I’m not exactly sure why it’s so difficult for a person to admit that they’re lonely and to talk about it. Maybe there’s this feeling of embarrassment or shame, because it’s evidence of some personal shortcoming. Maybe we think it’s evidence that we’ve done something wrong to cause our situation. The scariest possibility is that there’s some innate quality within us that repels other people; if that is the case, then there’s nothing you can do about it. It seems like such a massive topic, and I’m not sure how best to approach it. In a way I feel very qualified to talk about it, but in another way, I feel very unqualified.

I believe it’s probably safe to say that people with disabilities have to deal with more isolation than the general population. I suspect the problem is greater for non-speaking people. Social connection requires communication, so it seems reasonable that if that is difficult for someone, then isolation is more likely to occur and more severe. When isolation is present, loneliness is likely to follow. I would define loneliness as follows: an emotion that occurs when there is a significant discrepancy between the social connections one would like to have and the social connections one actually has. It is very much a matter of perception. One can be alone, but if that doesn’t bother you, then you’re not lonely. If I’m working alone on a project I enjoy, I probably won’t feel lonely.

I’ve observed a peculiar attitude that many people have towards people with disabilities. They forget that we have the same emotional needs as everyone else. It’s like were a different species, but we really aren’t. They forget that most of us are interested in having friends, intimate relationships, getting married and so on. We want and need to feel connected and to belong. People focus so much on our physical and medical needs, and the emotional needs tend to get neglected. The soul needs to be nourished just as much as the body if not more.

I said earlier that I felt qualified to discuss this, and that’s because I’ve gone through it. I have spent much of my life feeling alone and disconnected. Much of the time I’ve felt like there was no place for me. I’ve spoken before about the experience of getting my first AAC device. It was exhilarating at first, but it quickly became disappointing. It was a device which required me to spell everything, which is ridiculously slow. That was definitely an impediment to communication. My frustration was compounded by the fact that I didn’t understand the unwritten social rules with its infinite nuances. I looked and saw people talking, laughing, making friends, but I was stopped by my own confusion and fear. I’m sure I looked like I was uninterested, but I cared very much. There’s a popular stereotype that autistic people always want to be alone. While I can’t say that’s not true in every case, I think it’s mostly untrue. Getting my Accent 1000 five years ago has certainly made communication faster and easier. However, my understanding of the nuances of communication continues to be unreliable. Despite it all, my desire for connection remains even though I would never admit it out loud for a long time. And I know many other people can relate.

I suppose the obvious questions is: what should be done about it? This is the point where I don’t feel so qualified to give an answer. A good start is to remind everyone that people with disabilities have the same need for connection and belonging as everyone else; we are not aliens from another planet who are so different from the rest of you. Remember this in every intervention and interaction. Any path forward must begin there.