Lately, I have been thinking often about communicating with people with disabilities. To some people, it might seem like a weird topic to take up space in my head. Nonetheless, I have spent some time in the last few weeks considering what communication means for me. Maybe it’s because a close friend of mine recently invited me to work with her on a webinar about the topic. (Teaching Acceptance: Helping Children to Positively Interact with People who have Disabilities. If the technical glitches can be worked out, it will be coming soon.)
In the webinar, this friend and I talked about issues like personal space for a wheelchair user (Please don’t hang on the back of my chair or push me unless I ask you for assistance.) We also talked about the appropriate use of language (Disabled, not “handicapped” and “person with a disability” not “disabled person.”) That is because I am a person first, and my disability is secondary. I often tell people that I consider my disability to be a characteristic of myself, just like other people have freckles or blond hair.
I think it’s one of my purposes in life, to help people who don’t know that kind of stuff to learn it. My goal, when I speak to a class or a community group, is to empower people who don’t already know the information I have to share, so that they can have it for the rest of their lives. One of my favorite groups to talk to is little kids because I think if I can get kids to understand that I am more the same than different, then they have a better shot at growing up to be adults who are comfortable around those of us with disabilities.
However, I am fully aware and totally understand that not many people have had experience being around people with disabilities for long periods of time. And I am aware that most people, including myself, are not comfortable with what they are not used to. I get it. Really.
One of the things my cerebral palsy means is that I cannot drive. In turn, that means that I can’t go many places by myself and can’t get out as much as I would like to. That just is what it is. But it is something I wish was different. Not going to lie. I have often said that the social implications of my physical disability are much harder for me to deal with than physically not being able to walk.
There are times when I feel isolated. And there are times, beyond anyone’s control, that I spend long stretches of time alone. Therefore, when people are uncomfortable around me in public, it can feel like a “double whammy” if you know what I mean. I am alone more than I like, and then often times people are awkward when I am out and about. I know that I don’t hold the monopoly on this issue. I bet lots of people with disabilities face similar challenges. It is also true that some days when my pain or spasms are bad, the logistics of arranging transportation and being totally ready to go when a person giving me a ride shows up at my door just doesn’t seem worth the effort. That is simply another “is what it is” thing. It all simply means I am not as social as I would like to be.
An additional dynamic that complicates the issue occasionally is that my friends have busy lives, with jobs, families, and lots of things they are doing. Like most other people in this modern hectic age, I don’t see some of the people I care about often. Most live far away and have so much going on I get exhausted for them just hearing about it. That’s okay. I don’t blame anyone.And it is completely valid that only the people who are in my life on a daily basis see the realities and ramifications of me not getting out much and not having much opportunity for social interaction.
I need more connection, and it is time for me to think outside the box. With those things in mind, I am putting together a list of people that I would love to be in touch with on a regular basis and I am going to ask them all if they would be willing to Skype with me at times that we schedule. I think it could work, and I am getting psyched about the possibilities.
And what do I say to the people who are still uncomfortable around those with disabilities? First, I want to say it’s okay. You will get no judgement from me whatsoever. It is totally natural to feel awkward around new people and in new situations. People are never responsible for experiences they haven’t had. But please don’t stay there. Just be willing to stretch yourself a bit and move outside your comfort zone.
Where do you start? The Cerebral Palsy Foundation recently started a fabulous campaign to deal with this very issue. Just say “hi.”