On Helping (and how not to do it)

On Helping (and how not to do it)

Shortly after writing my last article, I got on public transport (the Tube in this particular case) with a good friend of mine who had read it and sympathised with me. The Tube was packed, rush hour nightmare, and I wasn’t able to get a seat. I didn’t want to say anything, as I find it very awkward and just generally embarrassing (there’s a whole other blogpost in that…), so I was prepared to just stand. My friend, who we shall call H, could see I was in some pain, and decided to help. The following exchange occurred:

H (to seated man) – “Excuse me, but can my friend….”

Me (cutting in) – “H! What the hell?! Sorry, ignore them, its fine, don’t worry” *looking daggers at H*

H – “But can my friend sit down, she’s in a lot of pain and really needs a seat”

Man – “Oh, uh, yeah…” *looks at me*

Me – “No, its fine, thank you” *blushing furiously*

The man then proceeded to get off a couple of stops later, and I sat down then. The entire thing made me incredibly uncomfortable, and actually brought me close to the point of tears. When I confronted H about it afterwards, when we got off the Tube, they explained that they were only trying to help, and that if me being annoyed with them was the cost of me not being in pain, then so be it.

I am sure there are some of you who will sympathise with H, and not understand why I was annoyed in the first place, so let me explain. I still have deep seated difficulties with explaining to strangers, in crowded and public places, that I have an invisible disability. I very rarely (until now) actively “out myself”, even when not doing so causes me pain. For me, it is my choice, and a very personal one, when I tell people, and in what circumstances I do it.

I understand that you all want to help. Its difficult to see a friend in pain, and “do nothing”. But as anyone with a chronic condition can tell you, they will have weighed up the benefits and costs of saying something themselves, and made a choice. That choice might be to say something, it might be to stay quiet, or it might be to ask you to help them by speaking on their behalf. For you to remove that choice from them, to make it on their behalf, is not helpful. It can cause greater distress than the physical discomfort you think you are alleviating, and it will spoil their day. Having a physical disability gives you every day, real experiences of having your choices removed from you, and your friends should not be adding to that.

My main message is, if you know someone with an invisible disability, and you want to help, just ask. Or, wait for them to ask you for help. It’s a matter of consent, and without it you are only adding to their problems.

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On Passing as Disabled

On Passing as Disabled

I have an invisible disability. When I was 12, I contracted CIDP, a chronic neurological disease with side effects including weakness, fatigue and muscle or joint pain. As a result, I have difficulties with mobility, balance and muscle strength, but do not shake, limp, or have any visible symptoms (until I start running out of energy at least). As with many neurological disorders, sometimes you can’t tell its there.

Because of my illness, I have a Freedom Pass which allows me free travel on buses. Surprisingly enough, these are not handed out freely by the government, and there are documents and criteria which must be fulfilled before you get one. The pass has my photo on, and a yellow stripe, to contrast it from an Older Persons Freedom Pass, which has a blue stripe. This morning, I used my pass to get on a bus to work, and had the following exchange with the driver:

Me: Shows pass getting on the bus

Driver: “Wait, let’s see that”

Me: Hold pass up closer to his window, so he can see it properly.

Driver: Looks from pass, to me, to pass, to me, as other passengers queue behind me

Me: (jokingly) “Yeah, I dyed my hair since then”

Driver: “Where did you get it from?”

Me: (by now flustered) “Uhh, I have a chronic nerve condition which means I can’t walk very far?”

Driver: Raised eyebrows, expression of disbelief

Me: (blushing through embarrassment)”Look, it’s got my name on, I can show you ID if you want”

Driver: (disbelieving, begrudging tone) “Alright then”

Now, as you can imagine, this left me a bit flustered. I do not enjoy having to explain my disability loudly and clearly while the general public sighs and tuts behind me, and I should not have to justify why I have a disabled persons pass with my face and name on it.

But this is by no means the first time this has happened. I can’t count the number of bus drivers who have stopped me, the number of people who have thrown me dirty looks when I ask for a seat on the train, or who have told me to “walk faster for fucks sake” in tube tunnels. Or even more extreme, the teenagers asking why I “walk like a spastic”, or the security guards assuming I’m drunk because I lost balance and momentarily lean on a wall to recover. And I think I know why this happens.

I am not visibly disabled. I do not carry a stick, or use a wheelchair. I don’t shake or twitch, I am not missing any limbs, and I’m not elderly. I am young, and if you meet me while I have enough spoons (if you don’t understand that phrase, read this) you wouldn’t be able to tell there was anything wrong. I also manage my disability well, I plan routes ahead and don’t try and do things which I know will hurt too much. And because of that, I suffer this particular breed of discrimination. I find myself considering buying a stick I don’t need, just so I don’t have to constantly explain myself. I have caught myself exaggerating a limp when approaching a bus, so the driver won’t challenge me. And that’s wrong. The world needs to wake up to the existence of people like me, because we are everywhere, being quietly embarrassed and shamed because of our need for support.

If you think that this isn’t good enough, that people collectively need to be better, then please do one thing. Stop making assumptions. That man staggering outside a shop is disabled, not drunk. That woman walking ahead of you, slowing you down – she’s not doing it deliberately, she’s going as fast as she can. And that young person using her Freedom Pass? She has one because she needs it. All of those people need you to support them, not condemn before you know their circumstances. InvisAbility is a thing, deal with it.