Thursday 15 May 2014
A funny thing happened at Parent Teacher Interviews.
Last night I had one of those moments. One of those moments where you realise that you have become used to being invisible or less in an able society. Since I've been using a wheelchair I have been faced with the extremes of living with disability in a society where I am seen as different.
I've been abused by an elderly gentleman who found my very presence an affront to his delicate sensibilities. Ignored in more shops than I can count. My chair has been grabbed and I have been moved like furniture. Or if bumped into, I am given a glare for daring to be in the way. I have been treated like a child. As if I am cognitively impaired. Or that I am extremely hard of hearing. All of it combines until it becomes very apparent just how little society is set up for those with a wheelchair, or other difference, and just how uncomfortable many are with our presence.
Somehow we become intimidating by simply being. People don't know how to approach us so either abuse or avoid. We are the bogey monster, the other, the reminder that perhaps it could happen to them.
I have given up on expecting that places will be accessible. Even when I am told they are, I have found that individual ideas of accessible vary greatly. Even the motel we stayed in when we moved told us the room we had was accessible. And sure it was, once I was inside. The step at the front door, not so much. So when I rang my son's school to ask if I would be able to attend his parent teacher interviews I was pleasantly surprised to hear that, no the interviews wouldn't take place in the classrooms many of which were on the second floor. Instead they were to be held in the school hall which had a ramp for access.
However, arriving at the hall I was disheartened to find that a) one of my son's teachers was up on the school stage, accessible only by stairs and b) that the room was tight packed and I wouldn't fit between most of the desks and chairs.
It's hard to explain the level of disappointment and sadness you experience when you realise that you can't even do the basics like attend your child's parent teacher interviews. Parenting with chronic illness and disability is hard at the best of times, and frequently fraught with guilt. Sitting just inside the doorway of the hall I felt my heart sink. Once more my difference made the simplest of tasks impossible.
I was resigned to the fact that I would have to sit next to the waiting chairs whilst Mr Grumpy went and spoke with my son's teachers. Standing out like a sore thumb. Because resignation is familiar. I get tired of having to ask, or make a point. I get tired of educating the uneducated. I get tired of always feeling like a burden. I get tired of feeling different. I am tired of fuss. Sometimes it is just easier to sit in the corner and accept that this is just the way it is.
But then a funny thing happened.
One of the teachers came up and mentioned that there was a table available where I could sit and have the teachers come over to me, if that made things easier. That the teacher who was up on the stage would come down to chat to us. That they had seen my need and acted. And all of it was no hassle.
I realised I was overcome with gratitude. And that the gratitude was out of proportion to the event.
I couldn't count the amount of times I said thank you.
I couldn't stop saying to Mr Grumpy how nice it was.
Why was I gushing over such a minimal act?
Because I am so used to no one caring. Or when help is offered it is either begrudging or infantalising. It is sad that I should be so grateful to this one teacher for seeing us struggling and offering a simple solution.
Because I am used to a world where I am abused by old men or ignored or mocked or demeaned or....
A world where I am patted and spoken too like I am in a segment of Play School.
A world where I am an inconvenience.
Because those are your choices when you are different.
Sitting in the school hall chatting to my son's teachers I realised that I am so used to the negative that any positive experience becomes heightened and takes on an importance out of keeping with what in truth is a simple act.
I am grateful to my son's school. But it does make me wonder why, if it is so easy for them, is it so hard for the vast majority of society?
Love this End the Awkward campaign by Scope in the UK. Loved Alex Brooker after seeing him on The Last Leg. Come on Australia, time to do a similar campaign here.
Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.