Note: I have struggled this way and that to write this blog. It's imperfect. It may offend. It is not meant to. I have decided to publish it because in here, the mess that follows, is a point I really want to make.
Coming through the door I was excited to see the new elevator. I wondered if it were quicker than the old one, which ascended slowly as if it, itself, had a fear of heights. The doors opened with a welcoming whooosh and I was on. The ride was smooth. And it had that 'new car' smell and, I guess, that's appropriate. What was nice was getting back to the office and seeing people. Saying, 'hey' and doing things that I really needed to be at the office to do.
The elevator had changed in other ways too. I didn't even notice because I don't need to notice. The old elevator marked the first floor up, where head office is, "2" (are you following me?) but this one marked head office as "1". Big deal. I knew where I was by feel and simply got off.
When it came time to leave, I waited for the elevator with Joe, who wanted the excitement of a ride in the new car. He was jokingly practising his 'ooohs and ahhhs'. The door opened and a woman with an intellectual disability was on the elevator. She is a bright and capable woman, one who I sometimes forget has a disability at all. She glanced over and saw the number '1' shining on the panel and panicked. She didn't know where she was. Even though she'd seen the little anteroom that the elevator opens into on that floor a thousand times, the number didn't say '2' she gets off on '2'.
Fear crossed her face. Real, deep down, in the bone fear. 'I don't know where I am,' she said her voice full of anxiety. Both Joe and I reassured her in calm voices that she was at head office and that she could just step off and she'd be where she wanted to be. But she couldn't step off. It was wrong. She gets off on '2' not '1'. I asked her to slow down her breathing because she'd gone pale. She listened for a moment to my voice, focused on who I was ... I work at head office ... this must be head office. This took a fair piece of time. She got off, quickly opened the door behind me and saw that it was head office and she was so relieved that she had tears in her eyes.
We rode down in silence. Not a single 'ooooh' not a single 'aaaaah'. On the way home I thought again about intellectual disability and how little it is understood. People get my disability, they see the wheelchair. The know automatically that my life needs adaptions. They know automatically that I will need cut curbs and ramps and grab bars. Nothing needs to be said. People with intellectual disabilities, however, because they are capable of so much physically and often a fair bit verbally, we can forget that this is a disability that has a huge impact on how someone operates within the world.
People may get impatient with me every now and then as they wait for me to manoeuvre my wheelchair around an obstacle or up a ramp. But mostly they understand. For those with intellectual disabilities, however, the urge to impatience is huge. People forget that even a slight developmental delay has huge ramifications that require adaptations and patience and time. Processing doesn't happen quickly. Sequences aren't naturally connected. Abstract concepts get lost in translation. Elevators that say 1 instead of 2 are a huge, incredibly difficult, problem.
Yet I hear impatience in the voice of care providers. Both parents and staff. Like someone is purposefully having difficulty with learning, with doing a task. Even a task that's been done a thousand times can become impossible in the face of distraction or stress or when it's part of multiple demands. This isn't an 'act' it's dealing with a really major difficulty.
Should someone see me, in my wheelchair, at curb that I need to get up and yet there is no curb cut, they will understand my frustration. They will see me rolling back and forth as a means of looking for a way up. They will see the unfairness of the situation.
Should someone see a woman with an intellectual disability become confused because of changed numbering or lettering and become hesitant getting off an elevator, they will most likely become impatient and maybe even rudely say 'get off for heaven's sake'. Yet her disability is greater than mine. I can identify the problem immediately, I know what the solution is, I can safely move around and survey the area looking for an alternate, I know what to do if there's nothing to do. She, however, had none of these skills. Oh she can walk, where I can't. She can enter and exit an elevator more easily than I. But she lives in a world impatient with her confusion. I live in a world where my frustration is, if not understood compassionately at least it's understood intellectually.
I'm glad we were there when the door opened. I'm glad we both saw her confusion as real and her fear as reasonable. Her world had changed without explanation. We could calmly reassure her. We could use other cues to get her to recognize her environment. We knew that she wasn't willfully holding us up, that she wasn't 'attention seeking' or faking it. She lives with a significant disability in a complex world - that needs to be honoured and understood. She was cognitively confronted with an uncut curb. Frustration, fear and even anger would be justified.
People with intellectual disabilities are often misdiagnosed as 'lazy' and 'stubborn' as 'attention seekers' and 'self-saboteurs'. That this misdiagnosis happens with those who supposedly know them best is tragic. We forget, easily forget, the impact that disability has on a life, because those of us with them work very, very, hard (oh so very hard) to make it look easy.