Sidelined | Jenny Sealey | TEDxExeter

This talk was given at a local TEDx event, produced independently of the TED Conferences.
Disability does not occur because someone has done something wrong. So how, instead of being vilified and treated as beggars, can disabled people be enabled in their efforts to give their great contributions to society?

Good afternoon, I am Jenny.
I'm deaf, with speech.

I'm the mother of a glorious
20-year-old son called Jonah.

My mum did say I could do whatever I want,
but my careers officer said:

"Jenny, you're deaf,
you should be a librarian."

(Laughter)

But I'm not, I'm the Artistic Director
of Graeae Theatre Company.

It is the best job in the world!

I've got a cracking team
back in the office,

and I work with
the most extraordinary cohort

of deaf and disabled artists,

and we put them center stage.

I love my job.

What I'm going to do this afternoon,

it's just a few soundbites
and the personal stories about me

and some of my deaf and disabled artists.

About what it's like
working in this current climate.

Behind me in a minute,
there'll be a film showing.

This group of people were
my 44 deaf and disabled trainees.

We trained them up
for the Paralympics

to be center stage in that stadium.

This lot, and me, are dependent on

two governmental schemes to support us:

Access to Work
and Independent Living Fund.

Access to Work is
the government's best kept secret.

It was, it is, and I hope
it'll continue to be

the most fantastic scheme
which enables me and other deaf people,

and other disabled people
to enter the work force as full and equal,

to ful-fill - Why do I use words? -
(Laughter)

to fulfill our role with equality.

For me, it means I can have
the glorious Steve and Jeni

who you've all been watching today.

It means I can access TED Talks.

When deaf and disabled people
are working, they come off benefits.

There are about 37,000 people
who use Access to Work.

So we're off benefits,
we're working, we pay our taxes.

And in turn, we also employ
sign language interpreters,

support workers, and all the rest of it.

And in turn, they pay their taxes.

Steve, Jen, do you pay your taxes?

(Laughter)

Phew! Thank God for that!

So that's Access to Work.

The Independent Living Fund
is exactly what it stands for.

It's a fund to allow disabled people

to live independently

and choose their support worker.

But in December 2012, Esther McVey,

who was the Under Secretary of State
for Disabled People,

announced, just out of the blue,

the Independent Living Fund
was going to close.

It's going to close in June 2015,

six weeks away.

It is now going to be managed
by the local authorities.

We all know that local authorities
are being cut to Smithers.

So how are they going to absorb
the cost of this, I really do not know.

The pot for Independent Living fund
is 320 million [pounds].

And a weekly package
is around £346 a week per person.

That compares very favorably
with how much it costs

for one person per week
in a residential care home.

That cost is £3,500 a week.

£346 per week, £3,500 a week,

we can all do the maths can't we?

It's a very young fund actually.

Only 8.7% of people who use this
are over the age of 65.

The closure of this fund
is breaching Human Rights,

Article number 19,
"A right to independent living",

Article 28, "The right for an adequate
standard of living and protection".

When Bradley Hemmings and I
started to do our work

on the Paralympic Opening Ceremony
of course we registered Stephen Hawking.

Professor Stephen Hawking
gave us our very first quote,

I love it, and I use it a lot:

"Don't look down at your toes,
look up at the stars. Be curious."

Well, I am!

I am very curious to know
why deaf and disabled people

are considered second class citizens,
why we are ghettoized,

discriminated against
and deemed worthless.

Can you just think for one single moment

if Stephen Hawking had been told

that they couldn't meet his access costs,

because of his physicality, his disability
he shouldn't be allowed to be a scientist.

We wouldn't know about
black holes or Hawking radiation,

we would not know about
our cosmic Universe.

If Beethoven had stopped composing
when he became deaf,

we wouldn't have
the 9th Symphony, "Ode to joy".

Roosevelt, if he hadn't been able
to stand for president,

because of his paralysis,

he would not have got America
out of the depression,

and millions would not have benefited
from his New Deal scheme.

And Frida Kahlo, can we imagine
not having the artwork of Frida Kahlo?

We have so much to put
in to the fabric of civilization.

I've been battling personally
with Access to Work

for the last 18 months.

My first letter was, "Dear Jenny,

your hours of sign language provision
is 35 hours per week.

We are changing that now
to 72 hours per month.

Also, you are not allowed to use

fully qualified level 6
sign language interpreters.

because your work is not deemed
'jargon based' enough."

Excuse me? I only work with level 6.

(Laughter)

"Dear Mr. S, yes, we know
you have a mobility impairment,

but can't you get a friend to help?"

"Dear Mr. K, your ILF is being cut."

"Dear Ms. G, your lip speaker hours
of 23 hours a week

are now going to be 23 hours a year."

"Hello, is this Access to Work, this is
Graeae's Access Coordinator speaking,

who wanted to know about BSL provision
for some of our deaf actors."

"Hello, yes, this is
Access to Work. What's BSL?"

(laughter)

I mean, hello?!

In this country, there are
1,900 interpreters,

that includes trainee Interpreters,

but 48% of them are thinking of quitting

because the deaf person can't guarantee
to get their access support covered.

So we're going to become like Thailand,

where there are only 20 interpreters
for the whole country.

Thailand, and other countries,
because of cultural beliefs

think that deaf and disabled people
did something very evil, something bad,

something sinful in a past life,

and that's why we've born
into this life, disabled.

And you may remember,some of you,

our very own England manager Glenn Hoddle
had that same philosophy.

I do find it sad that my global network
with my deaf and disabled community

is founded upon a shared experience

of being discriminated against,
ghettoized, and sidelined.

We have to have skin so thick

to put up with the crass attitudes
and crass comments.

A Bangladeshi activist, blind,
was doing some white cane training

in the Government's building in Bangla.

He arrives, the government
people give him money.

They think he's a beggar
because he's blind.

In Africa, so much work is being done

for those families who give birth
to a disabled baby

for that baby to not be deemed
a shame or an embarrassment,

for that baby to be
the glorious bundle of joy that it is.

And here, last year, Graeae did
a co-production of Threepenny Opera,

an audience member was very shocked;

he thought all
the deaf and disabled actors

busking outside in the foyer
before the show

were real buskers

not that they would be actors in the show.

So her bottom nearly fell out
when she saw them on the stage,

she was like: "Oh my God,
stage management,

those disabled people are on the stage!"

I love that story.

(Laughter)

"Dear Jenny, I'm M.

This is what my care package
will now look like.

if it's only social services with
no support from Independent Living Fund.

I will be able to have
overnight, every night,

a support worker who will put me
to bed and wake me up in the morning,

at lunchtime someone else will come in,
give me my lunch and a cup of tea

and in the evening come
and give me my dinner.

That's every day.

Per week, I will have support
for 7 hours of social activity,

90 minutes for shopping,

45 minutes for ironing
- I don't quite get that one -

and I will have two 15-minute slots
for a full-body shower.

On a daily basis, between 9 and midday,

I will have no access to go
to the bathroom, as and when I need to.

So when someone
arrives at 12, I will be wet,

so most of their time will be taken
bathing me and changing me.

So I'll only have time for a sandwich,
and the same will be in the evening.

I will be wet, I'll need to be changed,
and then it'll be a microwave meal

because there's no more
time left for cooking.

That will be my life.

I need the independence
to go to the bathroom

when I want to go to the bathroom!"

My friend, an actress I work with,

who has been campaigning and fighting
for the survival of the ILF,

when I said to her, "Sophie, you've been
at residential school all your life

you don't want to go back
to a residential care home, do you?"

She said, "Jen, this is not
on my radar. Jen, it can't be.

We've been fighting for thirty-odd years.
No. No, it's not going to happen.

It can't happen."

"Dear Jenny, I'm a deaf graduate.

I've just got a first
in Business and International Studies.

I've just had my first job.

Access to Work gave me 6 hours a day,
5 days a week so I could do my job.

I've just got a brand new job,
I reapplied to Access to Work.

They've given me 3 hours a week.

I've lost my job."

And for every deaf person
that loses their job,

so does a sign language interpreter,
or two sign language interpreters.

So the unemployment statistics
are getting two for the price of one.

Also, this one:

"Dear Jenny, Access to Work don't think
it's relevant for me to have access."

"Dear Ms. M, we don't think
you need access.

Yes, you have a brain injury
and a mental health problem,

but you are aware of it."

Also, another one,
this is actually the RNIB.

My blind friend phones up:

"Hello RNIB, my dog had a cone
because he's had an ear operation.

He's managed to get the cone off.

He's been scratching his ear,
I think there's blood everywhere.

What do I do? Help!"

"Oh dear, that sounds awful.
Well, there's a number on his collar."

(Laughter)

"How do I access that number? I'm blind!"

And the government framework,
at the moment,

for access of deaf-blind people

is that they can use
sign language interpreters on a screen.

Deaf-blind sign language
is a tactile language.

How you're tactile
with a video screen, God only knows.

I'm very curious about all of this.

I'm curious about

how do they make these decisions
to make all these cuts? How?!

I'm also curious about why people think
they can say what they do to us?

"Oh, with that arm,"
- one of the artists in the picture -

with that arm darling,
we'd never have you on our stage.

Jenny, Lorca didn't write 'Blood wedding'
for people like you to be in it."

Well, I'm sorry,
but when someone says no, I do it.

So, we do have a production
of Lorca's "Blood wedding"

on at the Everyman,

and it's on tonight,
and the last night is tomorrow.

"Dear Jenny, don't you have
your own stages to go to?"

Yes we do, the Everyman Liverpool.

"Dear Jenny, don't you see

it's much more palatable

when non-disabled people play
disabled characters?"

(Laughter)

And this is my bugbear
which I've talked about a lot since 2012.

My glorious para-athletes,
para-performers,

everything about the Paralympics,
was just glorious,

and I really thought that phone
would be ringing off the hook;

and it did, Channel 4 phoned and said

- well, I didn't do that,
they had to be emailing me in the end -

but they said, "Dear Jenny,
the Paralympics was fantastic!

Please could you put forward
some of your deaf, disabled professionals

and volunteer cast
for our very empowering programme,

The Undateables."

Have you seen it?

It's car crash television.

It's sick, disgusting, and I'm hell bent
on getting it eradicated,

and I'd like you to join me on that.

The other thing is, at the moment,

Mark Harper has put a cap on support,
- he's the Minister for disabled people -

has put a cap on access support.

So, I'm only going to be able to do

about 60% of my job
with full and equal access.

I don't know how to run a theatre company,
be the Chief Executive of Graeae,

be the Artistic Director of Graeae,
with only 60% of support.

So, because I'm running out of time now,

I ask all of you, you will have deaf
friends, and family, and colleagues,

please make yourself familiar
with all the issues

in and around Access to Work
and the Independent Living Fund,

and join our campaign to try
and overturn these crass things.

Because, I'm sorry,

I have a lot to give to society
and so have all of my lot,

and I'm damned
if we're going to be sidelined.

Thank you.

(Applause)