Please do not…

This past weekend I visited my brother who is studying in Paris. James, Jonathyn, and I ran around Paris for 5 days, from one tourist site to the next with some fun exploration in between. I love Paris, but I was surprised by the way I was treated and infuriated by the ignorance toward disability that was shown. It seems assumptions about disability shape typical interaction to a larger extent than I would have thought would be the case in today’s ‘informed’ and ‘inclusive’ society.

Because of my ankle problems I am unable to stand in place for long periods of time (I can do about 30 minutes on a good day, 10 on a bad) or walk very far without the help of crutches. Because I keep my feet together and alternate between both feet and both crutches when I use my crutches I ‘look’ as though I have a disability (*cringe* bear with me). People tend to interact with me on that assumption. This makes it possible for me to experience first-hand the way people approach disability.

The weekend in Paris inspired me to create a list of a few behaviours and assumptions people should avoid when interacting with individuals with disabilities. I have encountered these behaviours both personally and at a close range (that is, through my brother, etcetera). While I am not altogether bothered about my personal experiences I know that if I am treated this way then my brother and the kids I work with certainly will be, and that infuriates me.

I would like to give a voice to my little brother. The boy I work with every summer. The kids I am in placement with, etc. I know these things don’t just bother me.

When you are interacting with me:

Don’t make assumptions about what I can and cannot do

Because I struggle to stand in place for very long you will find me kneeling in queues pretty much everywhere. So when we got to the Catacombs in Paris and faced a 2 hour wait I went to speak with the people working there. I went up only to ask if they allowed people with standing/walking difficulties to jump the queue as they do at many attractions. When I presented the situation the lady immediately informed me that I “wouldn’t be able to manage the stairs.” I explained that I was actually fully capable of using stairs; I just struggled to stand in the queue for 2 hours. She insisted that “people like me” couldn’t go into the Catacombs because there is not an alternate exit. I do not have a movement problem; I have a pain and circulation problem that stems from instability. I was very frustrated that she had taken one look at my crutches and determined what I could and could not do when she really had no idea of the nature of my difficulties. What she should have done is listened to me and trusted that I knew what I could and could not handle. The individual knows more about themselves than you do and you should never assume you understand their condition, especially if you have only just met them.

Don’t talk to the person with me instead of me

I have no communication or understanding difficulties yet I have experienced on many occasions the frustrating and demeaning behaviour of people talking to whoever is with me instead of directly to me. Until you learn otherwise, assume I am capable of answering your questions. People often ask me questions about the boy I work with over the summer instead of asking him. My response is usually either to turn to him and wait for him to answer or simply tell them that they can ask him directly. The opportunity to engage in conversation and voice their own opinions is a right that should not be taken away from individuals with disabilities. If you are not sure about an individual’s ability to communicate it is usually helpful to take cues from whoever is with them, try to pattern your communication on the people who know them better than you do.

Don’t split me from my group

If I’m with a group I don’t want to have to be separated because of my mobility. When we were at the Eiffel Tower the lady told us that I was “not disabled enough” to use the lift. Eventually she told us I could use the lift but only one other person could go with me. This meant that we would go up while the odd person in our group would wait for 2 hours to meet us. Bit of a damper. I understand that they want to limit the number of people who can use special access, but consider how much a group is already limited if they are with someone who requires that special access. My group and I have to search out inconvenient lifts, take breaks often, use the shortest route rather than the most enjoyable, ask for wheelchair rentals at museums, etc, etc. When we get somewhere where I or my brother requires special access, it would be lovely to not be even further inconvenienced by being split up.

Don’t touch my wheelchair or crutches

After my first set of double ankle surgeries that had me using a wheelchair for 4 months (a sports wheelchair, I was pretty hard on itJ), I was astonished when while sitting in a cafeteria, a man simply pushed me out of his way instead of asking me to move. I remember my family being quite outraged, I’m glad they have my back. This is just plan rude. One, I am a human being, social rules apply to me. You would never just push someone who was standing in your way. Two, my wheelchair is my personal space. I don’t touch your shoes, you don’t touch my wheelchair. This goes alongside the don’t help me without asking rule. I am always very appreciative when help is offered, but often I can manage. Don’t be afraid to help, just be sure you ask before you act.

Don’t stare at me

It’s just awkward. It makes me self-conscious and annoyed that I can’t just go about my day like everyone else without attracting unwanted attention. I find it strange just how many people will blatantly stare at someone using crutches or a wheelchair. People use crutches. People use wheelchairs. People are different and do things differently. None of these things gives you the right to stare at them. The exception here is children. They are curious, but even children can learn the difference between being curious and being rude. (Occasionally when I am feeling cheeky I wink at people or look behind me pretending to try to figure out what they are starting at!).

It’s not easy to navigate a world that is tailored to the majority and not consistently adapted for the minority. Drastic improvements have been made but more changes are needed.

I believe that changes in society start with changes in attitude.

Changes in attitude start with better awareness.

And better awareness starts with you and me.

Much love,

Jalyss

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3 thoughts on “Please do not…

  1. Ben says:

    Ohh I used to get the “don’t talk to the person with me” thing all the time when I was out with the students I worked in Mauritius, although no doubt it is much the same in lots of places. “Would he like….?” usually got a “I have no idea, ask him” and people seemed to be amazed that the student would a) have an opinion at all and b) could express it.

    Interestingly “Does he take sugar?” was the name of a BBC Radio 4 show about disabilities, although long since finished. (https://en.wikipedia.org/wiki/List_of_BBC_Radio_4_programmes).

    B.

  2. […] to answer a question myself and when to pass it over (I talked about this in another post here: https://jjzapf.wordpress.com/2013/04/27/please-do-not/). At one point, a friend asked me if I wanted something to drink. She said she was going to ask […]

  3. […] Please Do Not (on how to be respectful towards individuals with disabilities) […]

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