A blog post for Blogging Against Disablism Day 2009
“I am still disabled when my disability is invisible” – a digital artwork.
Just because my disabilities are not obvious because you can’t see a wheelchair, a cane or stick – doesn’t mean I don’t need your understanding.
I don’t expect you to be a mind reader but when I tell you I have a problem with something you have to trust me that I know what I’m talking about.
If I ask you to email me because talking on the phone is difficult I’m not trying to be awkward. You need to look at your organisational practices because with my illness sometimes asking me to answer lots of questions over the phone is like asking me to walk around the block when I am bedridden.
If I tell you I need you to speak slowly and be patient I’m not being difficult. I need time to process what you’re saying and think about responses. I have neurological symptoms which can affect comprehension, speech and memory. Just because I can talk normally at the start of our conversation doesn’t mean the effort won’t leave me speechless, exhausted and confused by the end of it. You’re going to have to trust me – I know what my disability is like.
Don’t assume that because I look well and capable, that I am, especially when I tell you I am not. If I meet you and you can’t detect my disabilties it’s because I manage my condition very carefully so I am not in constant pain, utter exhaustion and struggling with neurological problems like memory loss and communication. If you push me these will be apparent – maybe while I’m with you or maybe once you’ve gone. I’m not eccentric, I’m not crazy, I’m not being difficult, I’m not exaggerating. I’m telling you about my disabilities – please give me your understanding and respect.
There’s not point asking me to “speak up, speak up, I can’t hear you – speak up”. I’m speaking softly because I don’t have the energy to speak any louder. Take it as a sign of my disability not as being awkward. You wonder why I asked to do this over email?
Even if I am standing up when I tell you I can’t stand for long don’t assume I am being difficult. Assume I know what I’m talking about. Because when you make me continue to stand I am likely to fall, likely to trigger all sorts of other physical problems including not being able to speak anymore to tell you what the problem is. My speech, comprehension and memory may be badly affected. My body will crash and I will be in pain, weak, exhausted in a way that you likely have never experienced.
Yet still you insist I must phone you, not email. I must visit in person.
I must fill out this form which is 50 pages long.
I must use the stairs to access such and such.
I must stand and wait in line.
I must return this form or answer this letter within 5 days even if I’m too sick to do anything.
I must answer these questions no matter how fast you speak at me.
I must move at the same pace as everyone else around me.
I must fit in with a convieniant time for you to visit regardless of what is best for me – even when you’re from an agency supposed to help sick and disabled people.
I must speak up, recall every piece of information and remember what is said in this meeting (without making notes which is frowned upon).
I must take the unsolicited advice of people who once felt quite tired and don’t recognise I have chronic illness which leaves me disabled.
I must laugh when people make jokes about being in a wheelchair and take it on the chin when they criticise me sitting on the sidelines.
And when I do these things to fit into your way of thinking and then I get very sick afterwards and get more disabled – you think I am just being difficult.
Trust me – even when my disabilities are invisible I am still disabled.
Other Blogging Against Disablism Day posts from around the web which caught my eye:
- Ashy’s Blog: “Anyone can do it”
- Trouble is Everywhere: BADD: How the Non-Disabled Person can Participate (from one non-disabled person to another)
- Cynical Chatter from The Underworld: Fear and Loathing in the UK
- Diary of a Goldfish: A Living Learning Experience
- This is My Blog: Well-meaning Insults
- A Load of Old Squit: When helping yourself doesn’t help
- Cheaper Than Therapy: Sometimes You Just Gotta Say
- SpeEdChange: Suicidal Ideation
- Womanist Musings: Fibromyalgia: The Invisible Pain
- Bad Cripple: Ableism and a Water Shed Experience
- Butterfly Cauldron: The sharks are here every day