On Bowling and White Vans and Words (oh my)

Here is a picture of a girl I know. Her name is Sammi.

Now, think carefully before you answer. What is Sammi doing?

You answered 'bowling', right?

Well, in this case, you are right.

But if Sammi had a disability, you might have been wrong.

In the language of the service sector, you can't just go bowling.

Sammi would be at an 'activity' - she'd probably get there in a white van, with a bunch of other people with disability (and some support workers, who may or may not be wearing polo shirts). It's gotten to be a bit of a joke in the disability sector, hilariously portrayed by Peter Leidy here in a song called 'Three Days A Week'.

So if Sammi isn't bowling, what is she doing?

She's keeping occupied and stimulated, in order to improve her quality of life.

She is engaging in a shared opportunity for fun and playfulness.

She is participating in an activity that encourages independence, social inclusion, communication or expression of feelings.

She is maintaining her physical fitness, and developing skills and independence.

She is increasing her social interactions in the community and reducing isolation.

She is participating in a shared activity, which can promote a sense of belonging.

In this photograph, taken on my son's 20th birthday, Sammi was about 18. As a person without a disability, she might go bowling five times a year.

If she was a person with a disability, she might go bowling every Thursday for the rest of her life.

That's not a normal state of affairs. And neither is the language of the social service system.

I read this marvellous blog about why the language of the social care system makes disabled people's lives sound even less "normal" than they are. It's written by the father of a guy named Stephen.

1. I live in my home. Steven's current placement is in the family home.

2. When I make a pizza, I'm making a pizza. When Steven makes a pizza, he's increasing his independence skills (as overseen by an occupational therapist).

3. If I cry, I'm sad about something. If Steven cries, it is logged and analysed by the psychologist and positive behaviour team.

4. If I shout or swear, I'm angry about something. If Steven shouts or swears, it is challenging behaviour and new behaviour management plans need to be drawn up.

5. If I choose between steak or fish for my tea, I'm making a choice. If Steven chooses either steak or fish for his tea, he is being empowered.

6. I have friends. Steven has a circle of support and influence.

7. If I'm asked what I want to do with my free time, I'm planning my hobbies. If Steven is asked what he wants to do with his free time, it's his person-centred plan.

8. If I make an unwise choice, I've messed up. If Steven makes an unwise choice he may be lacking mental capacity.

9. If I sort my CDs into alphabetical order, I'm being a bit anal. If Steven sorts his Mr Bean DVDs into colour order, he is being inappropriately obsessive.

10. If I eat two Mars bars, I'm being a pig. If Steven eats two Mars bars, he is challenging boundaries.

Holy crap, he's right.

Wouldn't it be an interesting state of affairs if we applied service language to every aspect of our own lives?

Samantha (Ms 46, LGMD2i) will have marital relations on Thursday between 2030 hrs and 2230 hrs. She will be sexually active with a partner of her choice (husband, in the marital bed). The outcome will be mutual pleasuring and a possible orgasm. Her husband will be responsible for changing the sheets if there is a damp spot left. To be evaluated in three months time (and consideration given to the implementation of assistive technology during her person-centred planning session)

I'm very bored with the idea that 'choice and control' looks like a menu of choices.

I'm over employment services that keep people employed for 30 or 40 or 60 years instead of the 3.2 year old median, and call it a good thing.

I'm tired of service language and plans that don't mean anything.

Isn't it about time we reclaimed our power and did what other people do - exactly what they want?

Our Way

(to the song My Way, new lyrics by P. Leidy)

And now my time is here, I have a plan, I have a vision

They called the shots for years, the ones in charge made my decisions

They ran my life for me, and may I say, not in a fair way

But more, much more than this, I did it their way

Control, I had a bit, but not enough to really mention

And so, I will admit I did some things that got attention

You would too if each time you needed a ramp you found a stairway

But then you’d learn again to do it their way

Yeah, that was their way, they had control

I tried to say, Hey! I don’t like to bowl

I was their case, I was their client

I was embraced when I was compliant

I acquiesced, they were impressed, I did it their way

And then there came a time, my confidence was growing stronger

My life was gonna change, I wouldn’t take it any longer

I did what I had to do, and sometimes did it in a sly way

But now, I’ll show them how I’ll do it my way

And here, it’s pretty clear that now we face a brand new hour

We have a course to steer, we’re taking part and taking power

There’s hard work still to do, and I won’t do it in a shy way

Oh no, oh no not me, I’ll do it my way

And so my friends, let’s make the call

Let’s take the wheel, let’s take the ball

People we trust, our dreams they share

They’ll stand by us, they will be there

We’ll build our lives and we will thrive –

We’ll do it our way