I have started handing out cards with this link to people who ask me about my walking stick, usually at conferences and festival where I come into contact with a lot of people in a short space of time. While I feel that it's important to communicate and be generous where possible (especially as I have a relatively common condition that is still almost completely unheard of by those that don't have it), it's really exhausting and it can really make an event I should be either enjoying or working the room at, a whole lot less fun and much more painful. So I came up with this instead (with the help of my husband).
Before I get to answering this question, I wanted to ponder why I am asked it. I'm also allowing comments on this page so if you have been given my card upon asking about the stick and actually visited this page then I'd welcome responses to the following:
1. Why did you ask me this question?
2. What kind of answer were you expecting?
3. What are your thoughts after reading this?
I have some theories about this myself. I think people see me with a non-disabled looking body and a stick (which I don't use all the time, even within one day - double confusion) and assume that I'll have a funny story about falling down drunk, or having a funny-in-hindsight accident or something. Over the years I have played with a few responses to this question because the real answer is not short, succinct, cheerful, funny (well, not to apparently non-disabled strangers anyway) or an amusing anecdote.
Rather than ask where I am from, what I do, when I got my nose pierced, or if I appreciate the finer points of death metal, I'm asked "What's wrong?" or "What have you done?" As the first thing people notice about me, and the first question I'm often asked, it ends up defining me. If I have spent some time with someone, talked about a few things and they gently ask me what my condition is, that's totally fine. But to be asked within the first few minutes of meeting someone can be frustrating.
Also when I do answer the question, it's usually met with sympathy, which is something I neither want nor invited. I'm also not a fan of comments about bravery or difficulty. Check out the late comedian and journalist Stella Young on why she is not your inspiration.
I refer now to a fabulous meme that I saw recently, which relates to gender but that I think is applicable when we see anyone different, or using a walking aid or has tics, or walks in an unusual way...
(Where it says "a stranger's gender", read "a stranger's condition, injury or impairment", could also be used for "ethnicity", "class" and many more I am sure)
THAT ALL SAID, I AM STILL GOING TO TELL ANOUT MY CONDITION
So what is my condition? While I don't want to be defined by it, I'm sharing this because not enough people know about it and I want to get to a point where I don't have to tell people at all because they understand that diversity is part of humanity and some of us use sticks sometimes.
I have Hypermobility Syndrome (HMS). Or Elhers Danlos Syndrome HMS Type. The label depends on whether you were funnelled through the National Health Service for rheumatological issues or vascular issues.
DISCLAIMER: I am not an expert on HMS. It's an enormously complex condition. I am, however, an expert on my own. For up-to-date medical info, check out the Hypermobility Syndromes Association website (there's more than one hypermobility syndrome!)
An explanation I saw recently that really resonated with me was that because HMS is a connective tissue disorder, and connective tissue literally connects everything in your body, people with HMS are effectively coming apart at the seams.
In fact, for me, it's a little less sensational than that; the structure of our HMS tissues is different, at the most fundamental levels. The impact is pain, fatigue, anxiety, cognitive and autonomic disturbances (my favourite because these include such wonderful symptoms as light-headedness, gastro-intestinal problems, wild temperature fluctuations, sometimes I even forget to breathe!)
There's a lot that is still unknown about HMS. GPs don't often understand it and people with HMS can have a really hard time getting diagnosed as it's such an elusive condition to pin down. We also find that unhelpful structures and systems alienate us as pain, fatigue and anxiety can really flare up in the face of irritating barriers that prevent us from working, learning, getting adequate healthcare and so on.
I love my job, am sociable and enjoy being part of the arts sector, meeting people, engaging with something beyond the day to day work I am doing, but I need support to do so, and believe that making the world more accessible to everyone carries many rewards so I try to advocate, but it's exhausting, and I don't have the energy to communicate my needs and the importance of accessibility in every professional context. So I am trying to find ways to be generous and look after myself at the same time (hence the card!).
It helps when people understand that I need rest and a soft seat with a supportive back to sit for any length of time. I can't stand for long periods or be in really noisy environments for long. I need help with lifting and opening things. I'm constantly dealing with pain and trying to pace myself. The more people become aware diverse needs, the more open, diverse and exciting our industry will become.
Sometimes I dance, jump or run, but the likelihood is that if you see me doing these things, it's not a miraculous recovery, I am borrowing energy (or spoons) from the next day and have planned a day in bed so I can do it. I have a carefully balanced life and make decisions knowing as much as I can about my condition. In many ways negotiating HMS has helped me develop as a producer.
And sometimes I use a stick. Sometimes I need it for balance, weakness or pain. Sometimes it's for confidence. Sometimes in order to pace myself and make my batteries last longer for travelling, or an event or conference, it's a visual cue that I need a seat, space and occasionally a hand. And quite often, I could have a stick then not have a stick in the same day. Sometimes I need to slope off or take a day off to rest, have a bath, do something energising and then I come back stick-free!
Stick or no... you don't need to worry about it. We have plenty other things to talk about.
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