, , , , , , , , , , ,

At the end of my last Support Group meeting I struggled with completely being ignored. Our guest speaker had run very long and as I tried to close the meeting, wanting to share about our next gathering, who our guest speaker would be and what the topic would be, I found that not one person in the room was listening to me, with the exception of my husband.

I tried twice, raising my voice, to call the meeting back to order, to go back to our agenda and refocus the group so I could share information with them before they left, but there were two or three conversations going on around the room, the speaker was leaving, one of my support staff had begun repacking the resource materials and my co-facilitator was getting ready to leave herself.

After trying twice, I gave up, they clearly weren’t interested. I went about packing up our materials and closing up the room.

I recently was asked by a friend how things went at the last support group meeting and as I was recounting my difficulty at the end of evening she said, “…because of your disability people think you aren’t as qualified as others… As soon as you’re in a wheelchair, you’re discounted.”

I hadn’t even considered that as a possible explanation for why I was being completely ignored. Trust me, it wasn’t because they couldn’t hear me, because I’ve never been guilty of being ‘quiet’ or ‘meek’ and I’ve been told all my life that my voice ‘carries’ and can be heard, even when I’m trying to be discreet.

I have experienced what my friend was talking about, many times, especially when out shopping and at times have felt that it explained how I am treated in service coordination meetings for my son.

When you’re sitting down (using a wheelchair or ‘mart cart’) it’s as if you have a ‘cloaking device’, you’re operating in ‘stealth mode’ and no one can see or hear you.

To begin with, the world is a very different place when you’re seated. Nearly EVERYTHING is out of reach, aisles in stores, on the bus, etc. are tight and difficult to navigate. Obstacles abound in the form of curbs, narrow doorways, rain puddles, thresholds, etc. Opening and closing doors as well as using public restrooms require a level of contortion typically found in circus side shows.

In addition to the physical demands and dilemmas using a wheelchair presents, one has to deal with the attitudinal barriers society presents.

People seem to take one of three positions… 1) they feel sorry for you, think that if you’re using a wheelchair you also have some sort of cognitive disability. I’ve experienced people who talk ‘baby talk’ to me and seem to assume I’m not capable of doing anything for myself. 2) they are annoyed by you. They feel inconvenienced by your presence, feel you want special treatment, think you should be ‘catered’ to. People make uneducated judgments about why you’re using a wheelchair. 3) they simply ignore you, they don’t want to be faced with your struggles, differences, needs. Many more people than one would imagine don’t think wheelchair users deserve or truly ‘need’ any accommodations.

Trying to function in public settings can be incredibly frustrating, as people walk right in front of you; cut you off; stand in front of displays or in access aisles to ‘chit-chat’; as they pass you, they hit you about the head and shoulders with their bags and elbows; they lean on your wheelchair; stand over you to have a conversation with you, causing you to strain your neck to make eye contact with them; they sometimes push you out of their way rather than asking you to excuse them, etc.

I had not given a thought to the possibility that, among parents of children with disabilities, I would encounter negative attitudes based on my disability. After I started to consider this as a possibility I recalled having been told, years ago, that even within the disability community there was discrimination. There are ill feelings between people with hidden disabilities and those with mobility related disabilities.

The only way to change attitudes like these is to disprove the misconceptions of others by being an example for them. My husband has said that he’ll ‘control the crowd’ at the next meeting and I’ll continue managing the group, running the meetings, etc. Hopefully, in time, folks who come into contact with me will realize how much I have to offer and that their initial perceptions are wrong.