Ending the awkward

ScopeHelpline · February 2015

Hi All,
we received this email from a member of the public the last time we ran the 'End the Awkward' campaign and thought it might generate some interesting discussion points here in the online community:

"Do you think you could include something on how not to be awkward around parents with disabled children?

I used to endure total strangers marching up and demanding 'What’s wrong with your little girl?'; pensioners thrusting £1 into her hand (while ignoring my other 2 children who wouldn’t have minded a quid if there was one going spare); people staring for so long that her elder sister (normally a quiet and shy child) was provoked into marching up to them and demanding, “Had a good look, have you?”; people telling me I was a saint; people giving pitying glances; people (including a doctor) telling me there were “places” I could “put” a child like that; people talking about her in front of us (and her – she was well aware of their remarks), speculating about what might be “wrong” with her until, again, my shy and reserved eldest child felt compelled to confront them with “I hope you know she’s my sister!”; and now that’s she’s an adult (a happy and healthy one with a normal life expectancy who just happens to have some physical and learning disabilities) health and social services professionals on a very regular basis asking me if I want to write “Do Not Resuscitate” on her medical notes. It’s odd, because both of her sisters are healthy and have a normal life expectancy too, and no one’s ever asked that about them.

I realise I’m introducing a new topic here, but I feel so incensed about that last one that I’ve started a petition, if anyone at SCOPE would like to sign it, or maybe share it on their Facebook pages or whatever:

https://www.change.org/p/health-secretary-stop-asking-families-of-disabled-young-people-to-discuss-do-not-resuscitate-directives "

(sent from Ros, posted by the Scope Helpline)

ScopeHelpline · February 2015

We also received this email in a similar vein:

"Hi, I've been having a look around your site. I'm actually disabled myself - I have a connective tissue disorder (Ehlers-Danlos syndrome), POTS (autonomic disorder) and secondary fibromyalgia. I've only become so disabled the past 6 months or so - I now can't sit in regular chairs without intense pain, I use a power chair (crutches around the house) because of pain and fatigue, and I collapse a lot.

I really like your site. I think one thing that might be worth mentioning is that just because someone is disabled, it doesn't mean they taken themselves seriously all of the time. Whenever I meet someone new, they always look shocked when I start telling people about what I drove into this time (I'm terrible in my chair - dyspraxia and poor proprioception) and everyone else starts howling with laughter.

One thing I wouldn't mind some help with though, I don't mind people asking why I use a power chair, but when I tell them I have multiple daily dislocations, chronic fatigue, and pass out a lot - there's no way to say that light-heartedly? On top of that, my arms look like a staffie's chew toys as I severely self-harmed for 15 years. I haven't found a way to deal with any of this without people just being horrified at my situation, and it's awkward as heck."

(sent by Fay, posted by Helpline)

ScopeHelpline · February 2015

And finally, this one:

"I have just been reading your #endtheawkward web pages and absolutely love them! As a 21-year-old with a disability I can identify with a number of the situations discussed on your site and want to thank you for the work you are doing to help instigate change.

I thought I might let you know of a particular awkward experience which I am often on the receiving end of and am sure other young people with disabilities must be too - disabled parking rage! I use a combination of walking stick, crutches and wheelchair to get around and therefore use my blue badge all the time to get accessible parking. I am, however, able to get out of my car and stand before grabbing my bags and stick and going on my merry way. In the time between parking up and pulling out my stick, I can nearly always feel the burning stare of a livid person behind my back who is clearly assuming that I am not disabled and have in fact used the space unnecessarily. This sometimes leads to people (invariably of the older generation) rolling down their windows/tapping me on the shoulder/shouting from the pavement before I even leave my car and telling me that I should know better than to exploit a parking space which 'people who actually have disabilities really need'. Occasionally, even after I have explained that I am in fact disabled and have demonstrated my blue badge, I am told that I am clearly a liar. Admittedly, pulling out my stick/crutches/wheelchair and walking/rolling off with a glare in their direction usually feels great, but the situation happens so often that it definitely bothers me.

I don't mind patrolling of blue badge spaces - I am just as angry as the next person when I truly do see someone use them without just cause. However, I know full well that the comments I get are due 1) to my young age and 2) to the fact that it isn't immediately obvious that I have a disability. Consequently, I am continually being aggressively accused and patronised rather than gently asked to confirm that I am rightfully entitled to the space. I wish people could learn that yes, young people can be disabled and no, we aren't all disrespectful hooligans! Lastly (and I think this is even more concerning), this blue badge rage happens most commonly when I have a group of friends in the car with me and especially if we're laughing. Is it so absurd that people with disabilities might actually have other people who like spending time with them, or even more mind-bogglingly, that we might have a good and happy life?! This is a very worrying misconception!

I know this seems like a rant (and perhaps it is to an extent!) but I feel like if this situation happens to me then perhaps it happens to other young people as well and may be an interesting issue to highlight on your website. I normally find the whole experience quite entertaining because the accuser always ends up being thoroughly embarrassed when they realise their mistake, however it might be nice not to have to justify myself every time I park! This is only one of the many awkward situations which arise because I am a young disabled person, but I think it's probably the most obvious. "

(sent by Molly, posted by Helpline)

milo · February 2015

I read these three posts with interest. While there are some serious points, I'd like to agree with the idea that people assume that being disabled means that you can't have fun or that you should be taking things seriously.
Being in a wheelchair means problems with mobility not with laughing. I too get odd looks when I park in a disabled bay despite the hand controls and wheelchair. Guess it may have to do with having the kids and the dogs in the car, I'm sure we do a great impression of a travelling circus. I find the best way to deal with derogatory comments is humour. If someone stares at me in the chair, I tell them "keep watching, I do my own stunts" they usually blush and look away at that point. I guess the point I'm trying to make is that why should I feel awkward about being me, if someone feels uncomfortable about disability then I wish they would just say it rather than trying to avoid the subject. I'm quite open about my CP and don't mind if people want to ask about it.

Ending the awkward

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