What have you been hiding without knowing you were hiding it? I found mine this week and I could not believe it.
I do not tell people I am in a wheelchair. Nobody ever asked me to hide it. I just never said. Then I sat at a Christmas lunch with other spinal injured people and somebody looked up and said something that took the lid off. I am hoisted out of bed and across the room into a shower chair, completely naked, every morning of my life. I have twenty four hour care because things can go wrong fast. I am seriously disabled, and I have spent years quietly not mentioning it. I have a tear in my eye recording this.
One thing to try: Ask what you leave out when you describe yourself. Then say it once, out loud, to one person.
In this episode
(1:45) Lewis had a job for me
(2:48) The Christmas dinner with other spinal injured people
(3:51) Sat next to a man I had just met
(6:24) The morning routine nobody sees
(8:05) Why I have twenty four hour care
(9:18) What my carers actually do
(10:16) I did not know I was hiding it
(11:47) The world never asked me to say it
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Steven
The story behind this one
What have you been hiding without knowing you were hiding it?
I found mine this week and I could not believe it. I do not tell people I am in a wheelchair.
Nobody has ever asked me not to. I simply never say. I book restaurants and they have to ring back and ask whether I mentioned the wheelchair, and I have to say oh, yes, sorry, as though I had forgotten.
It came out at a Christmas lunch with other spinal injured people, which I had nearly not gone to. Somebody I had just met looked across and asked why they had never seen me at any of these. I laughed. And he said it: it is because you do not want to hang out with us, is it not.
So this week I did something about it. I filmed my carers getting me out of bed.
That means hoisted up into the air, carried across the room and lowered into a shower chair, completely naked. I have a pot belly and skinny legs and no interest in pretending otherwise. We cut a couple of frames for obvious reasons and I put it out.
Two things came straight back. One person said they had not realised how disabled I was. Somebody on Twitter said they had not known I was disabled at all.
What it taught me
I am seriously disabled and I have quietly not been mentioning it for years.
I cannot walk and I cannot bear any weight. I have twenty four hour care, not for company, but because of autonomic dysreflexia, which means something going wrong below my level of feeling can put my blood pressure high enough to be a genuine emergency in minutes.
When somebody says severely disabled I still picture somebody worse than me. On any honest scale, that is me.
And I have a tear in my eye recording this, because I had no idea I was doing it.
I had been reading Brene Brown's Daring Greatly, and I think that is what got the lid off. Was I ashamed of it? I did not think so. I love my life and I always have.
But something lifted the moment I said it out loud, and I have felt different since.
I wonder how many of us are hiding behind the makeup, the gym, the diet, the career.
Questions people ask
Were you being fake before?
No, and I want to be clear about that. Everything I have ever said stands. I simply left a large part of my life out, and nobody had asked me to.
Why does saying it out loud change anything?
Because the effort of not mentioning something takes energy you do not notice spending until you stop. Nothing about my body changed that morning. What changed is that I am no longer managing what people know.
Do you go to disabled meet ups now?
I went to that lunch, which is more than I had been doing. And I laughed the whole way through it, because spinal injured people have a sense of humour about this that would not survive being repeated in public.
Read along
The transcript
It follows the audio. Press any line to jump there.
vulnerability · disability · personal-story
Read the transcript
Hey, welcome to Living Deeper Lives.
I'm Stephen Webb, your host, and I was thinking about what happened
here this morning and the last couple of days, and I decided to
let it all out in a podcast.
So this podcast is all about that.
I hope you enjoy.
I done something this morning that.
Something I wanted to do for a long time, but been terrified of
doing it for so many reasons, and I did it.
And I cannot believe how much of my life I've been hiding away.
I really have.
And you may think, well, he's got 60,000 followers on Facebook,
110 or 105.
I don't know how many on Twitter.
I put videos out.
I'm doing this podcast.
But there's a huge part of my life that I hold away from.
I hide it away from the public, and it's so visible, it's
so obvious to anybody I meet, yet I hide it.
And this part of my life is my disability, me being paralyzed.
It's not because I deliberately go.
I don't want anybody to know I'm paralyzed.
I'm ashamed of it or anything.
I don't really know why, but I just tend to get on with my life.
I don't know whether I'm a good advocate for disabled people
or a terrible advocate for disabled people.
I remember when, just after I broke my neck, after, I could start
to talk and have my tracheotomy out, because for the
first four months, I could not talk.
And I had a phone call from a friend of mine, Juliet and Lloyd,
and they had a son called Lewis, and he was about five or six,
I believe, at the time.
And Juliet said to me, lewis has got something he wants to say
to you.
And they put him on the phone.
He held up.
He said, I've got a job for you.
It's like, okay.
He says, yeah.
I was in town the other day, and they were wheelchair dancing,
and they said they would have a job for you when you come home.
And I just thought that was so cute.
Just such a wonderful, wonderful.
I don't know if it's naive or just optimistic or just, you know,
he's in a wheelchair.
So there you go.
They're in a wheelchair as well.
Brilliant job.
Makes sense.
If you're short, be a jockey.
If you're tall, be a basketball player.
If you're in a wheelchair, be a wheelchair dancer.
So I thought that was a wonderful little thing.
But since then, I'm not a member of disabled clubs.
I don't go to meetups with people that are in a similar position.
Than me.
And I don't know whether it's because I avoid it.
I don't know whether it's because I don't want to see myself.
I have no idea.
This year, I did go to meet up with some other spinally injured.
The message come up on Facebook.
And so you come into the Christmas dinner and because it was
all of us in the same chat, and I went and read it, I was like,
ah, damn it.
I got kind of got a reply now, so.
So I said, yeah, I'll go.
So I went and met a few others and people I hadn't met.
And one of them looked up and said to me, it's so funny because
on the way there, Diane, my friend, said to me, why don't you
go to these things?
And I said, I don't know.
I don't want to hang around with them.
Do.
I was joking.
It was like, one thing as spinally injured people is we have
a wonderful sense of humor, and we joke about being disabled
all the time.
It's not something we're ashamed of, it's just something we
are, and we have a laugh with it.
And I think if we said some of the jokes we say in private, in public,
I don't think it would go down that well.
And even my daughter, we just joke a little bit.
So I got to this Christmas lunch.
It was an amazing Christmas lunch.
We all went in there, and I was sat next to a guy that I just
met, and he looked up and said to me, he says, so why didn't you
come and hang out with us?
How come we haven't met you before?
We've heard about you, but we haven't seen you.
And I just looked at Diane across the table and she laughed
and I laughed, and he looked at me and goes, it's because you
don't want to hang out with us.
Didn't it be honest?
And I just looked at him and fresh start laughing again.
Because he.
Yes, yes.
But that's not because I don't want to hang out with them.
Maybe there is something that I'm frightened of putting out there.
I don't know.
I'm on the city council.
I, you know, I join in with discussions, and when somebody stands
up and mentions about something about disabled or something,
I'm like, oh, I should have thought about that.
But I didn't.
It did not occur to me.
So I did something this morning that really has lightened
something off me.
While I was waiting for the carers to come in, I thought, I'm
gonna film them getting me out of bed.
I don't know why, but I was like, ready to do this.
It's like, come a time in my life where, you know, look, here
I am.
I. I'm naked.
This is who I am.
You know, I got a pot belly.
I haven't got the perfect body.
I often joke about that.
I don't know if you ever remember that video from that was
supposed to be from one of the alien autopsies.
And you got this little alien lying there with a pot belly.
Well, I often joke that that's my body with the little skinny legs
and the pot belly.
And I tend to hide it.
I tend to do my lies from my just above my belly.
And I tend to not put any pictures out or anything like that.
Whereas yesterday on my live, I pulled back and say, hey, look,
here's my belly and where's the gift in my belly?
Well, it stops me falling out when I go down the hill and have
to stop suddenly.
It stops me chewing my knees whenever, you know, I have to stop
suddenly and not run over somebody.
So it keeps me sat up.
What a wonderful gift that is.
Otherwise I wouldn't have to have seat belt in my wheelchair.
So this morning I. I said to the care, when they come in, I said,
we're gonna film getting me out of bed.
And of course my bed route, my getting up morning routine is hoisting
up in the air, going across the room and down into the shower
