Tuesday 26 March 2019

The height of the mountain we climb.

Long day’s work done, I step into the tube station.

Tall guy with a crutch and an uneven gait passes through the disabled ticket machine. I notice because I always notice now, then keep going to board the train.

Up ahead a woman in a white top is stood up next to her seat, swaying slightly, muttering to herself. She’s grasped the bottom hem of her top with the tips of her fingers. I walk by with a glance and move forward.

I always notice now.

Guy with the crutch boards shortly thereafter. He’s tall, wearing glasses, I can see that one of his eyes is focusing entirely to the side. None of this is terrifically important or memorable until he stops immediately in front of me and starts shouting back down the carriage. I can’t hear what he’s saying over my headphones, so press mute.

“…you can’t expose yourself here! There are children here! What the hell…”

I look back in the direction from which I came and the woman who’d been muttering has pulled off her top and is now stood in her bra and skirt. She slowly tugs another top on and resumes the zoned out swaying. I don’t think she’s all present but this is London, this is not all that uncommon. I don’t pay much notice but the man in front of me is now gawping at her, and starts muttering aloud until I hear “…ah now I feel bad for her…” and off he goes to grab the attention of a train employee.

She’s still swaying.

Employee steps on the train, as the woman now turns away and saunters down the carriage in the opposite direction, leaving her bag on the seat.

Alarms ringing in my head now, you don’t do that shit on a tube these days. Should I stay or should I go. I sit frozen for a minute and decide I don’t believe she’s dangerous but also that I don’t want to be close enough to wake up in a hospital knowing how wrong I was. I move down the train and sit behind a few barriers…you know, in case something explodes.

This is London. I hate living with that background fear.

Back to the man who alerted the staff member – now he comes by and starts talking to me about how he’s never seen anything like that on a train.

“I’m gonna have a seat…”

“I’ve never seen anything like it either,” says I.

Dude’s now talking about how unfair it is that society lets people suffer with mental issues, and he glances over “…she’s clearly got something wrong,” he says. “Why don’t they fix problems like that? If there’s something wrong with someone’s brain, why don’t they scan the brain, find what is wrong and fix the problem…”

He’s going on and I’m liking the conversation. The injustice for atypical people is apparent every day for me now and it’s surprisingly pleasant to engage in a conversation about it with a total stranger. My thinking is different, my situation is different. I care for someone who will forever suffer from injustice. I like this guy. I’m very much in the moment until out of his mouth comes:

“…why don’t they just fix it instead of letting them just mong out...”




(I hear nothing but red noise in my head. It may well have been an explosion because there was nothing but red noise in my head.)

This guy is disabled.

This guy will have been the focus of those dreadful disdainful attitudes, thrown away, uncared for at a glance of that crutch, those glasses. I would imagine that probably on this very day he’s been treated badly by someone and there and then out he comes with…

“…letting them just mong out…”

Has he forgotten his own situation? Does shit roll that far downhill that there is nothing left to do but roll it further? Find an underdog society views even more…under? No. Not today, man. No.

This man dug up that word and I stopped listening. That disabled man is no ally of my son. That man threw my son under the broken bus. I probably should have called him on it but it was late. I was on the train. And I was in total shock.



I expect this attitude from the uneducated bulk of society in general but to hear it from someone who I try to fight for every. stupid. day…

I don’t know what to feel but rage, nor what to see but the height of the mountain we climb. It’s fucking huge.

This is what we are up against.



Thursday 21 March 2019

These two are not the same. | World Down Syndrome Day 2019

Mismatched socks are ok. 

Total inclusion is better.

Lack of a battle to help your child live his best life, lack of societal disregard to a person's humanity.

Medical professionals ceasing to say things like "I'm sorry" and writing things like "Problems: Down's syndrome" at the top of every report.

I have a son. I have a problem. These two are not the same.

Today is World Down Syndrome Day for everyone. In our house it's every day.

Socks are fine but they don't stop science trying to eradicate my son's community. They don't prevent people from making foolish assumptions and slapping on labels. Head tilts and low expectations. Only real life knowledge does that.

Socks are great.
My son is greater.

The world can be as aware of Down syndrome as it likes. But it is high time the world stops trying to eradicate it and pays more attention to welcoming people to life. To learning what the realities in that life are.

Our life can be difficult. But it really has little to do with Down syndrome.

Today I celebrate my son. I advocate for my son. I try to educate people about my son. But I do that every day.

Today is for all of you to do the same.

Happy World Down Syndrome Day.

#wdsd2019 #Team21 #downsyndrome