Image description: A drawing of an ear with an arrow pointing towards it with the word ‘meaning’ written above the arrow.

Sometimes, I’m the one who wants your kindness.

Sometimes, I’m the one who needs your understanding.

Sometimes, I’m the one who expects you to share my rage.


Being different means something. It means that you can expect to live in a different social world from almost everyone else you know. It means that the experiences you have are not share experiences with most in your social circle. It means that when you all sit down to chat about your days, you will sit in silence, afraid to tell the truth and measuring how much those around you can handle.

I had a conversation with someone the other day who said, after I had explained something that had happened, wherein, thank heavens Joe was a witness, because of course I need a non-disabled person to alchemize a story into truth, she said, “It’s hard to believe these things happen to you because they never happen to me and because I would never do them to another person.” She’s right. It doesn’t happen to her. But, here’s the thing, what never happens to her, happens to me every day, several times a day, done by multiple people. It never, ever, doesn’t happen.

My size and my disability are both powerful magnets for cruelty and inappropriate remarks. Can we take that as a given.

What I’d like is to be able to talk about this without being seen as ‘attention seeking’ or ‘moaning and complaining’ or ‘misinterpreting my world.’ I want to reduce the sense of aloneness that comes when someone, for no reason, does something purposeful to hurt me, attack me, or shame me. But I’m shy of talking about it too much. This is why I love this blog, I can document it here. I have an outlet.

Why don’t I want to talk about it?

Because people are so nice, and kind, and understanding.

Great, but it’s to those who hurt me.

They are just putting you down in order to build themselves up, they must have really poor self esteem.”

Can I be, maybe a little rude, and say, I don’t care about their self esteem. I care that they put me down. I don’t want to worry about the number of affirmations they received as a child.

They must have been really hurt at some point in their lives and now they are just lashing out.

Um, and what science are you basing that on? I would guess that we were all really hurt at some point in our lives and I would guess that a lot of people survive that without becoming people who wantonly hurt others.  I don’t want to have to be the one who offers an outlet for someone’s displaced anger. I don’t see that as my social role.

They didn’t mean anything by it.”

Those who offer me healing. Those who offer me diet tips. Those who suggest a bit of exercise will have me up and doing marathons. Those who let me know that God, or calories, or exertion will heal me of the disability I have imposed on myself … do mean what they are saying. They are, firstly, assuming a false connection between my weight and my disability and then they are intruding on my life with their advice. And I’m a freaking stranger. They have no cause. My body is not cause or permission for you to march into my world.

You need to stop being so sensitive.”

Yep, sometimes I get angry. And my anger at what you see as petty, is justifiable anger. You see it as petty because you see my experiences from a distance and from your throne of privilege. Explaining my emotional reaction as a result of my personal weakness rather than because of social injustice takes away from me my ability to express rage at bigotry and bias and barriers.

You need a positive attitude. Remember … the only disability in life is a bad attitude.

First, shut up Scott Hamilton. My attitude is positive!!! Why do you assume that a positive attitude is expressed by simpering smiles and grateful grinning? If I didn’t have a positive attitude, I’d never fucking go out!! If I didn’t have a positive attitude I wouldn’t write, work, advocate for a better future. If I didn’t have a positive attitude I wouldn’t have tried to tell you about what happened today – I believed you’d understand. Good God, I am not someone who smiles in the face of adversity, I’m someone who wants to take on adversity and change things. That’s positive.

That happened to me too, so it doesn’t have anything to do with your weight or your disability.

I get that sometimes things happen to you too. I want to listen to that. I want to hear that. I want to support you. Really. I do. But when I tell you of a moment of discrimination, you pointing out that you’ve had someone treat you badly in a store, that one time, does not take away my DAILY experience of discrimination. It doesn’t prove your point that disability discrimination doesn’t happen because you have had a similar experience. It’s like the white guy who says that racism doesn’t exist because of the time that he had poor service in the grocery store, ‘it’s not racism, everyone gets treated like that some times.’

So what is it I want?

What everyone wants.

To be heard, not interpreted.

To be understood, without my experiences challenged or explained away.

To be supported, without requiring me to understand, forgive for feel compassion for those who hurt me.

To be safe to share rage, without being blamed for the feelings I had.

To be able to share my experiences, and not be told that those experiences aren’t real.

To have someone say, “That’s just wrong. What happened to you was wrong.”

So, what do I want?

What everyone wants.

To be valued, and believed, and for my words to carry meaning.

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