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.


  1. That is truly wonderful that someone actually thought about you for a change and changed what they were doing to accommodate your needs. It happens so very rarely! People do seem to see the wheelchair and panic! I am so glad that you were able to participate properly and be treated like a human being instead of an inconvenience.
    We went to a friends wedding in the summer and I specifically asked him was the place wheelchair accessible. The groom said yes. When we got there it was an old grade 2 listed house with a ramp with a massive lip on it which meant my husband had to push me whilst running to get the chair over it! The wedding took place at the bottom of the garden which was at the bottom of a hill only accessible by steep steps! Really? I had to get up and walk supported by two friends. By the time I got to the wedding area I was in agony and spent the whole service wriggling around like a worm. We also couldn't get me into the dining area in my chair. I've seen assault courses more wheelchair friendly!
    I am so pleased that you got out and attended something that is just so normal for everyone else.

  2. That rocks. I know what you mean about basic respect and kindness being vaunted to a whole new level, though. When I get a doctor that actually shows me respect and listens to me, I practically start fawning over them. Why? Shouldn't I expect respectful treatment from everyone I encounter? Alas, it is not so, because I'm *different*. Like somehow that makes me less intelligent. I dunno. It's aggravating in the same way that Chinese water torture is. I'm happy you got a taste of decent human courtesy, though. It's about damn time, and you totally deserve that, and so so so much more.

  3. So glad they found a way to work with you. One of my kiddos classrooms isn't accessible for me in the chair at all, there is a ramp but the step from the ramp to the building is ridiculous.
    (duh, you have a ramp that ends at a step people!)
    One of the other kiddos has a room without any physical hurdles... well other than I have to move a trash can and maybe slide a table with 5 kids over a bit so I can get in the doorway... only to block the walk way for anyone else to be able to come in.
    I know the teachers and office staff are wonderful and would be more than happy to do whatever needed to be done to accommodate me (for the particular event, lets not get crazy and think they'll fix the ramp or maybe have one class room not packed to the fullest allowing me to actually enter without accommodations)
    I am actually working on something on the topic, I am waiting to talk to the school.
    Love ya!

  4. I'm so sorry you have had bad experiences Michelle. In our case, it has been the opposite. If I take my girl (in a wheelchair) into a shop, the shop assistants show great awareness, shifting racks, finding the most accessible changing rooms, offering us baskets, etc. I've truly been impressed. We do get the odd woman who will look at us with disdain as we wait patiently for her to look up from her phone and let us through an aisle, but really, they are the minority. So thanks New Zealand for your empathetic shop staff!


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