By Kodey Toney
Working for the Weekend
Another weekend with Partners in Policymaking equals another two days chocked full of good information. The problem is I don’t know where to start. I’m going to have at least a couple weeks’ worth of information to share though. I’ll start by talking about our first speaker for the weekend Kathie Snow.
According to her biography that we were given, Snow is the mother of two young adults, one of whom has a disability diagnosis. She spoke about the ideas of changing the way we think and act by acquiring new attitudes. I’m going to try and share some of the highlights that I found interesting.
One of the things that made me think the most during her presentation was about how we see people with disabilities as different (something I’ve recently written about), and to an extent they are, but we shouldn’t point out their disabilities or weaknesses. Sounds obvious right? Well sometimes we do things that we don’t even think about how they will hurt our children. When we talk to others we tend to say things like, “This is my child, he has autism.” This is something I talked about a couple weeks ago, but her take on the subject was; why even bring up a disability until you need to?
When we first meet someone we’re often too quick to apologize or explain our children. This can sometimes give a false idea of your child. I’ve frequently said that if you walked into a classroom that Konner was in you probably couldn’t tell he was any different from others until you stayed for a little while. With so many myths and stereotypes about people with disabilities why should we give others an opportunity to form an opinion before they actually get to meet the person?
We all have needs. Some people wear glasses, hearing aids, braces, etc. In fact one of the best things Snow said during the presentation (at least for me) was that she was at a conference recently and was speaking to a large group in a hotel conference room. At one point she had the staff turn off the lights and made it pitch dark. The crowd was really uneasy, and as she started to settle them she explained that “electric lights are only assisted technology devices for people with sight.” I thought this was profound. Think about it. We all need something.
Another example that she gave was that we would start a conversation with someone by telling about our downfalls. We don’t go up to someone and say, “Hi I’m John and I had a tumor removed,” or “Hi I’m Mary and I had a hysterectomy.” Why should we just tell all about our children? Treat it like a job interview. You wouldn’t go in and tell all your bad qualities. You would explain what you were good at and what you like. Why not do that for your children?
She also explained that the number one need for people with disabilities, before the services, equipment, and funding, is relationships. This is a huge issue that we need to take a look at. She explained that quality of life is equal to relationships. Most people with disabilities only have contact with family, therapists, doctors, etc. Most of these are hired help. Everyone wants to have friends no matter who you are. The problem is that we tend to do one of three things. We either think they can’t have fiends because nobody wants to cope with them, we force people to try to mentor, or we put them with others who have disabilities similar to theirs. The intention is good, but the end result is usually not very good.
The first one is just segregation. We keep them away from other for their own good. They won’t get hurt. They won’t get upset. They won’t embarrass us. All these things, whether we want to admit it or not, actually go through our heads.
On the other hand we don’t know that there are people out there that don’t mind the quirkiness and eccentric actions. We’re not the only people in the world that can deal with our children. We like to think we are, but others can if we just let them.
Forcing people upon our children, whether for good intentions or not, even if they are great people and would be good for them is not the best idea. Sometimes it works out, I’m not going to say it doesn’t happen, but statistically it just doesn’t work out. They don’t get along, or the other person doesn’t know what they’re really getting into. More times than not the person mentoring loses interest and then the other child feels hurt by the situation.
When putting the child with another person with disabilities it’s segregating again. Snow explained that if you put people with autism with other people with autism they are never going to understand the social cues and aspects that we want them to know. It’s kind of like putting people in prison, said Snow. They go to prison to learn how to be better criminals.
Snow suggests that you find people with similar interests and put them together. Find clubs. If the person is into trains then find them a train club. It doesn’t have to be a train club for people with disabilities, just a train club. Get them involved with people with the same hobbies and pursuits.
As I said, this is only scratching the surface, but a few things I thought were interesting. I only hope that I have given a clear view of what I learned. I will tell more over the next couple weeks.
Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at firstname.lastname@example.org