December 14, 2022 • 49 mins
This December 3rd marks the International Day of Persons with Disabilities 2022, so what better day to announce our first new DISCOVER Voices podcast host, Dr Theo Blackmore. In Theo's first episode, he is joined by his friend and colleague Stephen Lee Hodgkins. Stephen is a self-taught community artist and visual thinker based in York. The duo discusses the implications of the International Day of Persons with Disabilities, cultural values relating to disability and much more!
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Episode Transcript
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(00:00):
There we go.
Hello.
My name is Theo Blackmore, and
I would like to introduce my colleague
and friend.
Hello, I am Steven Lee Hodgkins.
And we're in very different places,
as you can tell.
I'm not particularly overly attired
because I'm in the glorious south.
(00:20):
I'm down near Penzance in Cornwall,
whereas Stephen is in the grim north.
It's not that grim.
It's actually very, very, very beautiful.
So I'm in York and that is.
Yeah, that is several
hundred miles from you, Theo!
It is.
But our paths have crossed
several times in the past.
(00:40):
And so I thought
to kind of just set a context,
we talk a little bit
about how I know you, Stephen,
and so
I think the first time that we met
was in 2007 at a Lancaster Disability
Studies conference, because I was.
Yes, I think it was, wasn't it?
Yeah. Yeah.
I was studying for my Ph.D..
And you're studying for yours?
(01:02):
Yeah.
I mean, obviously.
Part of being in academia
is going to conferences
and presenting papers
and so I presented a paper there.
What was it?
What was the title of yours?
No idea!
The title of my paper? Yeah.
But my Ph.D.
was all about the French
(01:24):
sociologist called Pierre Borgia.
So I was interested in studying
his methods
and he was interested
in different kinds of capital.
So social capital
and cultural capital
of academic capital and how that affected
feelings of disability
was what I was interested in.
Well, what were you interested in?
Well, I.
(01:44):
Was at the time
I was
interested in the way
people talk about disability
and the way they
particularly disclose
their identities around it and then
how identity is managed by people
and also how
(02:05):
that varies.
Depending on.
Contexts like how activists talk about
disability and meanings
that surround that sort of thing,
and then also how policy deals with deals
with it as well.
So that is
that's where and I was with my colleague,
(02:26):
my colleague Barbara, who
I'd worked with and actually had recorded
a conversation with her about
a disability
that I use as a quote in my paper,
in my PhD, in my paper
that was presenting at that conference.
(02:47):
And actually Barbara came with me.
So it was a little bit
confusing for some people
because there was the person who's,
rather than just presenting the quote,
what I did is
I played a recording of her voice.
So she was in the room
and I was presenting.
And the thing she said was, she says and
she says uhm...
(03:09):
I try and use my disability
if that makes much sense.
And that was the
that was the kind of key point.
I was.
Used to talk about, which is kind.
Of.
You know,
you can't talk about disability
without it being assumed.
There's something negative about it
and that that is the dominant, you know,
the dominant.
(03:30):
View of of.
Disability
being a very negative
thing is very persuasive.
And while that might be you,
that might be a lot of people's
experience.
What's interesting
is that you can't break free from that
easily and talk about it
in a different way.
(03:51):
Right.
Yeah.
That's all very interesting.
I saw a podcast this morning
actually and it's all about
how some people
are trying to change the term disability
and some people are uncomfortable
with the term disability and calling
disabled people disabled people
and they were talking about
they were rejecting the idea
that anybody would call them
differently abled,
(04:13):
that it was two disabled people,
one of whom was saying, yeah,
there's no way
we'll be differently abled.
And the reason why people use that
is because they're uncomfortable
around disability and uncomfortable
around disabled people.
And those are non-disabled
people who feel that way
and try to use labels like this,
which is an interesting take on it.
Really? Yeah, totally.
Totally.
(04:33):
I think there is
that.
Is
it it goes against sort of
there's a there's an
it goes against common sense
or like the idea of common sense
that that is a possibility.
And yet that is just.
(04:53):
The the.
You know,
the way we sort of kid ourselves
or is it cultural values
related to disability.
Being
only a negative thing?
So anyway, this is very light
hearted podcast, as you can tell.
And we
just started at the breezier
end of the conversation.
(05:16):
What happened for me
was that
I did my PhD and then finished in the
I left academia
and I found a job
advertised in a newspaper.
And the job was to work
for an organization called
The United Kingdom
Disabled Peoples’ Council
on a project called the
Disability LIB Project.
The LIB stood for listen,
(05:37):
include and build.
And so I phoned the number
up to find out
a bit more about disability LIB,
and the phone was answered
by somebody who I didn't know
and his name was Yola,
and on a conversation with him
saying it was the kind of stuff
I've been doing for years.
How come I didn't have this job
and I got into a big old sulk about it
and he said, okay,
(05:57):
I'll get my boss to phone you.
And I said, Who's your boss?
He said, It was named Stephen.
And we then had a conversation,
you and I.
Then we started working with you
on that project
for a comfortable three years.
Yes, that was quite interesting.
That was looking at doing
it was kind of a train and support
programme for organizations,
(06:19):
for disabled people, organizations
and the the disAbility Cornwall was one
and there are lots all over the country.
And.
You are kind of unique in that
they're you know,
they hold values
that were about disabled
people being included. And.
(06:41):
Getting the right support,
and challenging.
The the.
Kind of negative views
about disability in challenges
speaking up and a lot of advocacy stuff.
So that's kind of how I got to know you,
I think,
because we would
travel around the country together
and meet up in Milton Keynes and.
Yeah.
Birmingham and Manchester
(07:02):
and do conferences
and talk at conferences,
but very practical conferences,
which was different
from the academic conferences
I've been to.
So it wasn't people
presenting papers,
it was people talking about
their lived experience
and people
like your friend Barbara
and lots of other disabled
people around the country
talking about
how they were living their lives,
what they were doing
(07:22):
when they got around
these different systems
that everyone has to deal
with as disabled people.
And we were kind of part of that,
which I thought was very invigorating
and really interesting at a time
that there really weren't
there wasn't
that kind of infrastructure support
for these kind of organizations.
I didn't. Feel. Hmm.
So that was very interesting.
(07:43):
So that was kind of
how I got to know you.
And then time passed and here we are now.
We're old
and i haven’t got any hair anymore!!
But the reason we're meeting up
now is because It's.
The end of November
in 2022 and the weekend ahead of us.
There is going to be December
and part of December is December
(08:03):
the third
and December the third is on Saturday
and that's the International Day
of Disabled People.
So I just thought I'd talk to you
about that for a minute,
although told you about that.
But hearing from you about that
because I think you know a bit about it.
Well,
so I, I, I was thinking about
(08:24):
this and I'm.
In.
The in York.
They are
here is disability week
one of the brochure.
So this is kind of been an initiative.
And then the
that is Pete who is the UK's.
(08:45):
First and finest.
Learning disabled Elvis impersonator.
But
that he performed in an event
we did a few years ago
called York Disability Pride
and So.
So I think so
he goes back,
(09:05):
he's got some history so it's 1992.
That the UN I think.
Is that right.
The United Nations General Assembly,
they say they say
the 3rd of December is to be known
as the International Day of Disabled
People or Persons with Disabilities.
(09:26):
And that and it's about kind of trying
to promote understanding.
About.
Disability and then that.
And what's interesting with
that is that they it's about
sort of
it's about respect and dignity
and independence,
I think, rather than just so it's it's
(09:49):
more about,
you know, understanding and equality
and inclusion than it is.
About.
Sort of understanding,
you know, different types of disability
type things about it's about inclusion.
And I think that that comes it
comes on the back of there being prior
(10:11):
to that, lots of sort of activism and
change. For.
Disabled people led by them themselves.
So
culturally.
It.
It was on the back.
Of
the.
Different ideas about kind of
(10:35):
how, where disabled
people should be supported
in, in, in, in the community or not
and in
and in different parts of the world.
They are different
people are different spaces.
And I think in the UK
we see
just prior to the
disability Discrimination Act
(10:56):
and the value in people white paper
that kind of
was pushing to close a lot of long
stay hospitals. And.
Segregated.
Living.
Homes type thing.
You know it's interesting
because the United Nations
(11:16):
as an overarching body does
seem to be the kind of organization
that you'd like that to happen in,
because they would be able
to spread the load
and spread the power of it
so that there are countries in the world
which are better than other countries
in the world.
I saw a program on telly,
I think it was last year
or the year before.
Anyway,
it was called the worst place
(11:38):
in the world to be a disabled person,
and it was a presenter called Sophie
Morgan, who's a wheelchair user,
and she went all around the world
and ended up in Ghana.
She decided it was the worst place.
And in Ghana, ideas about disability
are very linked in to religion.
So disabled
people are taken to churches
and people pray about them to kind of
get rid of the disability.
(11:59):
And if a woman gives birth
to a disabled baby,
the baby's taken down to the stream
and left by the reason for the night.
If they wake up in the morning
and the baby's still there,
it means the water spirits
have left the baby for the humans.
And that kind of
understanding of disability
is very different
to the understandings of disability
that we have in general in this country,
which, you know,
(12:20):
we are
we saying not the bad things
about this country.
And there are a lot of bad things
and things do need to get better.
And things are not anywhere near
equal between disabled
and non-disabled people. But
I think it probably is one of
the better places in the world
to live as a disabled person.
Yeah, I know how you feel.
Well, I mean, that the
(12:42):
you know, there's certainly a lot
you know,
there's certainly lots.
Of.
Positive things
if you kind of are comparing it globally.
And that is a
you know, that is a big challenge.
Is there any any
so it's right
that the UN should be
(13:03):
promoting it everywhere. And.
And
pushing those idea,
pushing ideas forward about like, you.
Know, how.
How people, all people can be included.
In.
All aspects of sort
of living and family life
and work and learning
and all those kind of things.
(13:24):
And I think as well that
the, the,
even within like,
you know, so you have different
people have different views
about disability
even within the same community.
And so even just lots of disabled
people are divided on many issues
(13:47):
about kind of, you know, learning like so
special education is a key
is a key thing
that can kind of divide people.
People believe that
some people believe that certain
support is better in a sort
of segregated setting,
whereas others believe.
(14:09):
You. Know, people.
Are more.
More generally
like it's about inclusion and, you know,
you should just be able to go to school
that's closest to you
and all that kind of stuff.
And
the, the, I mean, and,
and then also kind of around the issues,
(14:31):
issues relating to treatment arts
and and therapies and stuff like that,
you know. So there. Are.
And then kind of support as well.
We've seen in the UK
kind of some of the real,
you know, the tragic consequences,
you know, people taking their own lives
on the basis of how
(14:52):
they've been left to feel. Around.
Some welfare benefit cuts and,
you know, tough sanctioning.
And.
Getting much, much worse
now with the cost of living crisis.
Yeah,
the numbers of disabled numbers of people
who use food banks.
Yeah, we see mostly disabled people.
We.
You know, people with the lowest
incomes are all disabled people.
(15:13):
When the poorest section of the community
is all disabled people, it's
horrifying.
Yeah.
And the the, there's lots of.
Uh,
so.
So but if you think about some of the,
the gains that
(15:34):
disabled people have made
as one example of kind of
how social care
or independent
living can be achieved
and works really well.
We see around the
the, the provision of sort of direct
payments and how.
(15:55):
With the right support.
People can kind of live and participate
appropriately, you know, and I.
Think.
You know, that that level of
that aspect of policy and.
Support.
Has been kind of quite important
in the UK sort. Of.
Recent history
(16:16):
of including disabled people
within the community
and all the rest of it,
and supporting people to go about.
Their.
Their everyday lives.
You know, it's an interesting idea
is that the direct payments thing
I think is, you know, brilliant and
but it's not universal
and it's not universally applied.
(16:37):
And they don't know from authorities
all have different criteria
as to whether
you would be eligible for it
and whether they use it.
At the local authority level.
So some people... for example...
‘Person A’ living down here in Cornwall
might well receive it but ‘Person
B’ living in I don’t know where...
lets make somewhere up.
Mhm Up in the north
(16:57):
east might not be able to get it
for some reason or other
because of some kind of manageability.
But yeah.
And local authority finance as well.
Yeah.
And the support that exists
within the community that.
People.
Have access to in
order to support them
using direct payments.
(17:18):
Not an easy managing a budget, it's
not an easy thing.
And so, you know. You've.
Where there are supportive
organizations that know
and to help people do these things
it can work really well
but that that provision is also not.
Uniformed. By any means.
And there's a lot of variability,
(17:38):
you know,
even within areas that are close, close
across like London boroughs,
just to support for
that kind of thing is really,
really important.
When I am a long time ago
when I worked in an advocacy service
and that that kind of gets into
payment and.
Support. As well.
(18:00):
And remember the.
The.
My manager, Marie, she was asking
we were talking about
she was telling me
about International Day
and this was about, um,
and I think this might have been like
the first time I'd really come across it
and sort of understood,
stood the importance of it.
And she described it to me
(18:22):
as, as being like, you know,
it's about it's a,
it's a kind of a chance it's an event
that you can use
within your local community. To.
Just profile
and celebrate
some of the kind of
the great achievements
that disabled people have of of done
(18:44):
and, and, and by doing that, you show.
The world.
A bit
about how inclusion works
and the value of that sort of thing.
So, so what?
So we, we
so I've always been a kind of a fan of
trying to market with
something in various way,
(19:05):
even if it's just a small,
this small thing
like showing a film
with some friends to watch or
poetry is a, you know, he's a great way
to kind of get people
to sort of share things
about their experience.
And, and so
and one of the things that Mary said
to me
that sticks in my mind
(19:25):
was, was about this kind of issue
of the direct payments
and not how
how kind of some UK
people had really pushed for that
idea and had got a local authority to,
to, to kind of do something different
about the support benefit in it.
And so,
(19:45):
so that's a real achievement
to be celebrated.
Well, and
and I firmly believe
that the kind of that, you know,
it's one of many examples of things
that is good to kind of remember
about, particularly
around the third of December!
Yeah, I mean, disabled people very often
(20:07):
are at the front of things
and are pushing boundaries.
You know, we're used to doing it.
I often think this we're used to doing
in all areas of our lives
because, you know,
you wake up in the morning
and then from that point
until you go to bed at night,
there's things you're pushing
against all throughout the day
and you get a resilience from that.
If it doesn't grind you down,
you get resilience from that,
(20:28):
or you can get resilient from that
and you can get a bit of a fight
from that.
And so you kind of get used to that
in your daily life.
Everything's a bit of a struggle,
you know, I.
Use an.
Electric mobility scooter
and I've got a huge, quite big,
massive wall that I use
when I get out in the world.
And when I go out in the world,
suddenly I find that I'm doing
something alone, going from
A to B to meet my friend.
(20:49):
And there's a load of steps in the way,
so I'll get past it.
And so you get used to
that sort of fighting and aggro
in your life at all the time.
And so when you come
to our organizations,
I think our organizations
inherently have that kind of
sense of fight
within the organizations
because we have the organizations
of fighting
even more against
(21:10):
sort of social injustice and trying to,
you know,
level barriers and reduce barriers
for everybody, for individuals and for
kind of
disabled people as a group.
MM.
And so there's a kind of strength in that
I think in that,
so in those organizations for that.
And so
the International Day of Disabled People,
(21:30):
you know I'm a bit...
if you Google it, then it comes up
with all sorts of different things.
One of the sites that you've got,
you can either get the International Day
of disabled people.
You can also get
the International Day of People
with disabilities,
which gets my annoyance
goes up a little bit
because that’s
the whole social model thing about,
you know,
moving away
from those sort of terminology
because that's
a very medicalised understanding
(21:52):
where people have the disability.
So it's strange that
that there isn't a universal
use of the term anyway
across, across the whole thing.
Although I think that's to do is
just like local cultures
and, and any.
But I suffered with my views about sort
(22:14):
of how people
meet in terms people
to use although it can be it can be
it can be a sort of
like a signifier
to how people understand.
Or.
Where what people's
values really might be about.
(22:35):
Um.
You know, definitions of disabled
people or, you know,
that, that, that, that kind of thing.
Yeah. Language is a signifier.
Yeah. It's what it is, isn't it?
The language reflects
the way that we think.
So I think.
We have to
(22:56):
I mean, I think
one of the things, though, is kind of and
your first point was about people
talking about different
differently abled.
And all these new.
New terms were all kind, not new terms,
but kind of things that people
are always looking for.
A different way to describe it, I think,
and I think sort of some of the
(23:18):
is a challenge for
kind of inclusion, not
because if you kind of
if we all free ourselves from
labels, then,
you know,
we see our similarities and you know,
there are many of them with every across,
you know,
everyone can relate to one another.
We are firmly believed and yet and yet.
(23:39):
Finding.
Ways to describe your own experience
and sharing it,
sharing a kind of an identity.
On.
The basis of being different
from other people
is is quite important
and particularly important
if you need to build community and.
The.
(24:00):
Voice to kind of try and bring about
changes in.
Things, you know.
Creating an in-group and another group.
Yes.
That kind of thing we in that together.
Yeah so but then even within
I mean I think one of the things that is
people of kind of
(24:22):
the present the present
people are talking about people
talking a lot
about kind of the intersectionality
and where people experience
multiple forms of oppression
based on different,
you know, based on different
experiences
or aspects of their themselves.
(24:45):
And I think that's useful
sort of trying to understand,
you know,
how diversity is
and can be celebrated and,
you know, appreciated, but also
bring people, people together.
Yeah.
It was quite
we're quite a difficult group of people
(25:05):
to bring together
because it's always yeah.
Yeah. Definitely.
There's so many of us
and also we’re all so different!
So yeah, in the catagory of ‘disability’.
You got
people like me with an acquired impairment,
things like MS or whatever
it might be using electric scooter,
people with learning difficulties,
people with cerebral palsy.
You know, there's a massive list.
(25:26):
Yeah, it's
quite a difficult thing to unite us
all as a whole, as a cohort.
Yeah. And.
And I think that, that, that kind of is
so is some of it is
some of it's got right
then people can kind of just go off
and do their own thing and
and they don't, you know, that, that,
that kind of might not
(25:49):
that changes the
the, the, the, the experience for people
change changes the the
the kind of connections,
perhaps, that people have with.
With a
with.
A a group like disabled
people is in that term.
(26:10):
And so the International Day of people
with disabilities
or disabled people
as it as it works to achieve things,
there are other big achievements.
Well, I think I think
that, you know,
there's certainly a value in it.
And I think it certainly provides
an opportunity for people
to have conversation
and to go out on events and to kind of do
(26:32):
stunts that might kind of,
you know,
build, build community, build awareness.
So without it,
I would never have heard about the
your your Elvis impersonator.
So yeah.
And he's very good is.
Very. He's there.
And yeah.
(26:53):
So that that but it is
but I think also
when people hang on to so so in York.
There are.
This year has been interesting
because you've got some some of.
The.
There's been more attention by
businesses to participate
(27:13):
and to kind of think about
so so I know that kind of. The.
The there's a few quite successful
I think one successful hotel in.
The in the.
In the city
that has actively promoted York
Disability Week to It's kind of
within its venues and within
(27:33):
like staff group and stuff like that.
And.
And so who is it doing that
group, Disabled People's Organization.
So, you know, York Disability Week.
Came.
About after after a few years ago, me
(27:54):
and some colleagues from York Independent
Living Network
got some money to organize an event,
and we called it York Disability Pride,
and it was like a bit of a cabaret.
So we had some I think we had
Laurence Clarke [Comedian & Disability Rights Campaigner]
Came and performed, and then
we had a variety of other people.
(28:16):
So the idea he was like
sort of more national,
had a national profile,
and then we had quite a local group.
So there was dance and musicians and play
and then some poets
and, and then and also Pete aka..
Elvis did a slot as well
(28:37):
at one of the events as well.
And then that, that, then.
That then sort of.
Formed into.
Uh, I.
There was a kind of working group
for that and that, that developed
because and of to have a week.
(28:57):
So York is full of kind of lots
of different weeks here
because of its profile.
So it has your design week,
it has the York Walls
festival and you know, it's
just full of it. There's lots and lots.
I actually think probably anywhere
there's been a lot more attention
around using these
these events to within kind of community
(29:19):
work or whatever to to profile stuff.
So, so that
so York has
lots of different things that go on and
it also
York calls itself...
York declared itself
a human rights city a few years ago.
(29:40):
So I mean, it's
some of that some,
some of that's all about population
density, isn't it.
Because you know city. Yes.
Well we're not.
Well it got York Minster...a
Cathedral essentially.
So York is a city whereas there's
probably more people
who live in Tower Hamlets
than than live in York.
So you know, that is it's
(30:03):
it's location used to be York
used to be the capital.
It was the capital of North So,
you know, a long time ago.
But so York Disability Week
was kind of very much about trying to
celebrate
International Day and Disability
History Month.
(30:23):
So it was kind of a way
to try and promote that.
And then that turned into, Oh, let's do.
A let's.
Do a disability week.
And that way you could try and engage
lots of other organizations
to take part in it.
So some of the things
that are happening here this week are
the so. There are.
(30:43):
There like there's like Discos!
and then there's, there are
there's sort of workshops
and some of these are quite practical.
So there's driving
with a medical condition.
So really merit
centrism of driving mobility
and they're kind of showing how it works,
which is kind of a bit of a useful thing.
(31:04):
I actually know
someone just recently
whose is about to go through their
a medical
driving reassessment type thing.
So there's that kind of stuff
and then there's
the workshop on making your website
digitally accessible.
And then
(31:27):
it's poetry.
Yeah, poetry for all.
And then something
that I've been involved
with is an exhibition.
Of.
20 years of speaking up, self-advocacy
and learning difficulties,
a history of York people
first in photos and easy read.
So this is a... a
photo and text
(31:48):
exhibition that is at the local library
on these.
It's. A it's a sense
that there's 40 panels
with the telling history of York
people first
using a lot of their photographs
from their archive.
So some of them are.
Of.
(32:08):
Course, they started
they came out of like a
sort of a day centre
So some of the images are of
what used to happen in day centers.
And then some of it is about
kind of getting,
getting get more active and people
moving into their own homes
and stuff like that
so that it's interesting.
(32:30):
So there's this
whole load of things there.
So who is run by now?
Is that so?
So York is a human rights city
you might say and that they...
so York Disability Week then.
Out of
a previous event
what happened was that there was a forum
York's disabled peoples’
(32:50):
forum was established and then they
and so they're connected
to the human right city
and they run the York Disability Week
now so it's comes back from that.
So it's quite amazing.
No amount of stuff that's going on there.
I mean, I'd say I'm surprised about it.
I wonder whether there's
similar amounts of activity
going on elsewhere across the country.
(33:12):
Yeah, I mean, it
varies probably depends on it depends on
like sort of who's around and
and the kind of the infrastructure
of the local community.
So I know that actually there's something
I don't know if this is linked to
the International Day,
but the People's Museum in
(33:33):
Manchester there have just
done an exhibition on the
history of disability campaigning.
So that that's that's just opened.
I think.
And there's lots of there's
lots of kind of
reference to campaigns and.
Various stuff.
Because at the same time it's
(33:55):
of course, Disability History Month.
Yes.
Which interesting
isn't a month
like the 1st of November,
it's the 1st of December
16th, November
the 16th of December or so. Yeah.
I and I wonder whether
because I think
it was a disability in education
initially
(34:16):
kind of
promoting Disability
History Month as a, as a resource.
Learning.
Resource for schools and education.
Yeah. Yeah.
So I think it might be
to do with the school year
or the term times.
Then as to.
Why it goes like that,
I don't know that it's
(34:36):
might that is my guess.
Because what's
the name of the
because there is such an organization
does name.
Richard.
Richard Reiser
as I said Richard Reiser who used to be
who used to be on the international panel
of Radar
back in the day,
the Royal Association
for Disability and Rehabilitation.
So he was all flitting around the world
(34:57):
during all these meetings,
and he was the International Committee
for that
and he's now,
I guess, doing the UK
Disability History Month.
I think there's a website and
I think it chronicles activities
through that doesn't he.
That taking place across the country.
Yeah.
But yeah I mean that's another thing
the whole
(35:18):
disability history month
it's something to to celebrate,
you know, the history of disabled people
in across this country
and across the world really. But yeah.
A Disability History. Month.
Yeah.
So he is is
is really
I mean it's an important thing it's
also just thinking
that disability has a history
(35:40):
is interesting
to to to look at and I think.
That you know.
Museums and archives have started
just being aware. That.
History
disability does have this kind of
incredible history
really and should be kind of paid
(36:01):
attention to.
I know that there is a
there is a national sort of Disability
Arts Archive.
I don't know the name for it,
but I'm aware that that that kind of
and then increasingly,
you know,
existing collections have sort of
(36:21):
turned their attention
to trying to understand what.
What, what.
What they can see in their collections
through a disability lens.
Although, you know, that's a
is an interesting, interesting thing to.
To to.
To find because where do you. Look.
Particularly
because a couple of hundred years ago,
(36:42):
the terms we use today
would be very different
and people
sort of focus
was completely,
completely different.
So you might not even know where to.
Look for.
For disability.
Yeah.
I've always
I've always been very aware
(37:02):
that there isn't like
a museum specifically devoted to it.
So I think you can easily
fit a museum full of stuff.
This was the history is like you say,
it's change
and it's not even a case of 100 years
as terms,
you know,
that were around 30 or 30 years ago
that just don't exist any longer.
There is the national charity Scope
(37:22):
which changed its name and was it 94, 95?
And until that point, it was no,
it was called the Spastic Society.
And I remember when you worked
at the Disability Lib project,
I went up and saw the chief
executive of the day. Yeah.
And he and I.
Had a couple of the plastic figures
that they used to have outside their.
Shop.
(37:43):
Yeah.
The little girl with the begging thing
hanging out, holding out
to collect money for disabled people.
And then there was
another organization, the
the acronym for the Crippled
Child, Gemma, that I always remember them
as a little girl, that you put money.
That's all for a head, I think.
Yes. Yeah.
And you know, these things,
we very quickly
(38:03):
forget how quickly
language changes over time.
Yeah, totally. Totally.
I mean, a lot.
Of diffuse
the way that we deal with disability.
So we were all,
you know, back in the day,
somebody like me with Ms.
on a scooter,
I would,
you know, before scooters,
before wheelchairs, that's like 1950s,
even 1940s.
I'd have been in bed all day, every day.
(38:26):
Yeah.
Even tiny grey-thompson on the radio.
And she is talking about
if you came back
from the Second World War
with a spinal injury and, you know,
there were no wheelchairs around
at that time.
So if you came back from
the Second World War
with a spinal injury,
then your life expectancy was two years.
Yeah, but life
expectancy now is about the same
(38:46):
as everybody else.
So, you know,
things have massively changed
even within my parents lifetime.
Yes, totally.
Totally remarkable.
How much that different that
and also kind of
with that increased life expectancy, the
you know, the numbers of disabled
people have grown and grown and grown.
(39:07):
So kind of the might be
that there's be a.
B, B and not.
Not one day may be
if we keep going
the way we are going might
one day not be the minority.
But we must all go away.
I mean, the kind of,
you know, k
that was terrible
like two thirds of no more than two
thirds of people who died from COVID
(39:27):
were disabled people.
Yeah,
but then a lot of people who got COVID
are now experiencing long COVID.
Yeah, my mum's next door
neighbor in Penzance.
She's a nurse, a young us in our forties,
and she got COVID and she's, she got it
like six months,
eight months ago,
and she hasn't got out of bed ever since.
She's just completely laid low by it.
(39:49):
Yeah.
So that long COVID thing.
Yeah. Yeah.
And that, you know, that's,
that's, you know, that's not going to.
go away is it? That....
I mean watching all the terrible stuff
that's going on in Ukraine,
the Ukrainian war, this
(40:12):
giant machine creating disabled people,
isn't it?
It's just it's
what's going on over there.
Yeah. But yeah.
So the history of disability, it's,
it's an ongoing story, basically.
It's the idea around
how this disability arise
and how does it come from
the changing ways that it happens
and the changing attitudes
(40:33):
towards disabled people.
And it was a bit in my mind
I said it to you earlier,
I think this is probably one
of the best places in the world to me
as a disabled person,
it very much depends on who you are
and where you're from and your background
and your impairment and your income.
So there's a really awful story
on the news last week
(40:54):
about a mum who has two children
and she called local authorities, called
the social services
because her oldest child, who's ten,
was acting in ways that she
didn't know how to deal with.
And she
she called the local authority
just for some help.
Hey, look, can you give me some advice?
Can you give me some help?
What can I do in these situations?
(41:16):
Because he's hurting his younger
brother...
He's exhibiting
lots of abuse
that she didn't know how to deal with.
They said,
we'll take them away from an assessment.
And they took him away for an assessment.
And the assessment
was more than a hundred miles away
in a specialist hospital.
And she hasn't
physically touched him since.
He's in not bed in a
(41:36):
in a room with nothing in it,
with a mattress on the floor
and a few toys, and that's it.
And he's just left him
there, locked up all day, every day.
It's not good.
Is it.
Horrible?
And then the Winterbourne view
and all of that kind of stuff.
Yeah.
So, you know, although this is a country
where you can do things like live
independently
and can get direct payments,
(41:57):
there's also a whole section
of the community
which is completely institutionalized.
Yeah, well.
That won't change any time soon.
How cheery we are.
Yes, exactly.
Well, that's why you need to book and.
Pete...
Elvis in.
Our Elvis impersonator from your book.
Can you hold the book up again?
(42:18):
Because I just think that's really worth
a guide.
I just think that whole notion
about disability pride
is something that I'm
very interested in as an idea,
and it's something
that we need to start to develop more.
I think the sense of pride in ourselves
and who we are
and what we do and how we do it.
Yeah. And
how that can be a positive
impact on the world.
(42:38):
Yeah, totally.
And, and that,
that is, is a challenging thing
to just put pride next to disability
because people don't necessarily
find that an easy leap to make
if you've had a lifetime
of being criticized or undervalued.
(42:59):
Or
or or.
You know, sort of mocked
or just left out,
left to be on the outside,
you know, in in in very subtle,
sometimes very subtle
everyday ways that become.
..
Mean, a massive, massive
points of frustration.
(43:20):
Yeah,
starting at a very early age
time with the education system.
Yeah.
But, and the pride is not and so equally
part is just about being okay with it,
just as it is
as it stands,
without having to be a superhero
or to kind of celebrate achievements.
(43:41):
It's it's not, not like to kind of be,
you know,
despite this, I did this, you know,
you know, all kind of mountain
or whatever, you know, like just,
you know, just making a cup of tea
is a is a,
you know, is a big step or, you know,
those those things should be
(44:03):
should be celebrated as well.
It's a fine line between getting
between sort of saying,
look what I can do, but
and isn't that wonderful
considering my starting point?
But, you know, like just just that
(44:25):
I think that kind of
there is a tendency for
for us all to want to see heroes,
I think.
And and that sometimes works against us
because we can't be
we can't be.
We can't be normal.
(44:45):
We can't be regular citizens. Yeah.
That's what's difficult.
I think
we should have started
this whole conversation, and I didn't...
and I apologise by saying number 1:
look behind me! What a mess!
If you can see behind me
there are my grandsons pictures
on the wall.
And a tractor I can see there.
(45:06):
You can see the tractor,
see behind you is loads of stuff
hanging out and drawings and stuff.
What's, what do you do?
You do in all of that?
So.
Well I, I draw ..
I doodle, I call myself a doodler!
And so behind me are various.
There is doodles.
(45:27):
I'm working on.
So I'm.
I'm.
I did one recently.
Let me show you!
Just bare with me one sec
Yea they are fabulous doodles!
I saw your doodle that you did
for the Alliance for Inclusive Education
about the history of disability activism.
(45:49):
I thought that was great.
Oh, yeah.
There's that one.
There is, there is, a um..
So I.
Can't get it right.
Just bear with me.
Yeah, it's not great
television!
haha You get the idea.
Yes.
I will show you around the room though!
(46:10):
Oh, brilliant!
Look at that!
So, there’s
Uh so there’s
I am.
So yeah so that is
that that is that is one on...
oh actually, strangely...
(46:30):
I really
like this one (46:33):
here’s one
about Direct Payments. Oh okay.
Well it was from a
workshop I was involved in.
This is The Talking. Guide.
Yeah I see.
I saw
once I went to a meeting with,
you know, sitting next to you
and I saw your notebook
and my notebook is just full of scribbles
and words. Whereas your notebook...
it's like that. And it.
(46:54):
Is great. Yeah.
Different ways of understanding words
and different ways
of understanding concepts.
Yeah, totally spontaneous.
Yeah, totally.
And, and actually the.
The, the.
The piece that I've just
done with York
people
first about the
history, their history in an easy read
format is
trying to,
trying to
(47:14):
tell a story, trying to tell their story
and their their achievements
and the things that they they've
they've made happen in the last 20 years.
And I hope that maybe we might be able to
put some of their stuff into
the local civic archive
(47:36):
because they are an important group.
But they're, they're
getting that's getting.
The.
There's some work to be done to look at
how archives can be accessible.
I think.
That's a.
Yes.
And, and
(47:57):
then I think like, you know,
kind of understanding in
recent times there has been a kind of a.
More of.
An activist
voice.
For. Disability in that...
(48:18):
that is, you know, all about
what the International Day of Disabled
People is about.
It is about kind of profiling
the human rights of disabled.
People.
That's really neat
because you've just
ended the conversation,
I think in a really rounded way.
(48:39):
So we started off talking about that
and we kind of come back
to ending up talking about that!
Yeah.
That was brilliant.
Thank you very much for your time.
I really enjoyed
having a conversation with you.
Yeah, me too. And
I'll press the pause button.
Yeah.
Allow contact to you again,
maybe at some point in the future
and we'll do it again
about something else.
(49:00):
Yeah, that'd be great.
Most fun. Stay warm.
Yes, you too!
And it's going to get really cold
because it's about to be winter.
..
Yeah.
The real winter tomorrow isn't it?!
It is!
Well good luck and good
luck in York in the winter!
Thank you very much. Alright mate!
See you soon.
(49:20):
Hasta la vista! Bye!
There we go.
Hello.
My name is Theo Blackmore, and
I would like to introduce my colleague
and friend.
Hello, I am Steven Lee Hodgkins.
And we're in very different places,
as you can tell.
I'm not particularly overly attired
because I'm in the glorious south.
(00:20):
I'm down near Penzance in Cornwall,
whereas Stephen is in the grim north.
It's not that grim.
It's actually very, very, very beautiful.
So I'm in York and that is.
Yeah, that is several
hundred miles from you, Theo!
It is.
But our paths have crossed
several times in the past.
(00:40):
And so I thought
to kind of just set a context,
we talk a little bit
about how I know you, Stephen,
and so
I think the first time that we met
was in 2007 at a Lancaster Disability
Studies conference, because I was.
Yes, I think it was, wasn't it?
Yeah. Yeah.
I was studying for my Ph.D..
And you're studying for yours?
(01:02):
Yeah.
I mean, obviously.
Part of being in academia
is going to conferences
and presenting papers
and so I presented a paper there.
What was it?
What was the title of yours?
No idea!
The title of my paper? Yeah.
But my Ph.D.
was all about the French
(01:24):
sociologist called Pierre Borgia.
So I was interested in studying
his methods
and he was interested
in different kinds of capital.
So social capital
and cultural capital
of academic capital and how that affected
feelings of disability
was what I was interested in.
Well, what were you interested in?
Well, I.
(01:44):
Was at the time
I was
interested in the way
people talk about disability
and the way they
particularly disclose
their identities around it and then
how identity is managed by people
and also how
(02:05):
that varies.
Depending on.
Contexts like how activists talk about
disability and meanings
that surround that sort of thing,
and then also how policy deals with deals
with it as well.
So that is
that's where and I was with my colleague,
(02:26):
my colleague Barbara, who
I'd worked with and actually had recorded
a conversation with her about
a disability
that I use as a quote in my paper,
in my PhD, in my paper
that was presenting at that conference.
(02:47):
And actually Barbara came with me.
So it was a little bit
confusing for some people
because there was the person who's,
rather than just presenting the quote,
what I did is
I played a recording of her voice.
So she was in the room
and I was presenting.
And the thing she said was, she says and
she says uhm...
(03:09):
I try and use my disability
if that makes much sense.
And that was the
that was the kind of key point.
I was.
Used to talk about, which is kind.
Of.
You know,
you can't talk about disability
without it being assumed.
There's something negative about it
and that that is the dominant, you know,
the dominant.
(03:30):
View of of.
Disability
being a very negative
thing is very persuasive.
And while that might be you,
that might be a lot of people's
experience.
What's interesting
is that you can't break free from that
easily and talk about it
in a different way.
(03:51):
Right.
Yeah.
That's all very interesting.
I saw a podcast this morning
actually and it's all about
how some people
are trying to change the term disability
and some people are uncomfortable
with the term disability and calling
disabled people disabled people
and they were talking about
they were rejecting the idea
that anybody would call them
differently abled,
(04:13):
that it was two disabled people,
one of whom was saying, yeah,
there's no way
we'll be differently abled.
And the reason why people use that
is because they're uncomfortable
around disability and uncomfortable
around disabled people.
And those are non-disabled
people who feel that way
and try to use labels like this,
which is an interesting take on it.
Really? Yeah, totally.
Totally.
(04:33):
I think there is
that.
Is
it it goes against sort of
there's a there's an
it goes against common sense
or like the idea of common sense
that that is a possibility.
And yet that is just.
(04:53):
The the.
You know,
the way we sort of kid ourselves
or is it cultural values
related to disability.
Being
only a negative thing?
So anyway, this is very light
hearted podcast, as you can tell.
And we
just started at the breezier
end of the conversation.
(05:16):
What happened for me
was that
I did my PhD and then finished in the
I left academia
and I found a job
advertised in a newspaper.
And the job was to work
for an organization called
The United Kingdom
Disabled Peoples’ Council
on a project called the
Disability LIB Project.
The LIB stood for listen,
(05:37):
include and build.
And so I phoned the number
up to find out
a bit more about disability LIB,
and the phone was answered
by somebody who I didn't know
and his name was Yola,
and on a conversation with him
saying it was the kind of stuff
I've been doing for years.
How come I didn't have this job
and I got into a big old sulk about it
and he said, okay,
(05:57):
I'll get my boss to phone you.
And I said, Who's your boss?
He said, It was named Stephen.
And we then had a conversation,
you and I.
Then we started working with you
on that project
for a comfortable three years.
Yes, that was quite interesting.
That was looking at doing
it was kind of a train and support
programme for organizations,
(06:19):
for disabled people, organizations
and the the disAbility Cornwall was one
and there are lots all over the country.
And.
You are kind of unique in that
they're you know,
they hold values
that were about disabled
people being included. And.
(06:41):
Getting the right support,
and challenging.
The the.
Kind of negative views
about disability in challenges
speaking up and a lot of advocacy stuff.
So that's kind of how I got to know you,
I think,
because we would
travel around the country together
and meet up in Milton Keynes and.
Yeah.
Birmingham and Manchester
(07:02):
and do conferences
and talk at conferences,
but very practical conferences,
which was different
from the academic conferences
I've been to.
So it wasn't people
presenting papers,
it was people talking about
their lived experience
and people
like your friend Barbara
and lots of other disabled
people around the country
talking about
how they were living their lives,
what they were doing
(07:22):
when they got around
these different systems
that everyone has to deal
with as disabled people.
And we were kind of part of that,
which I thought was very invigorating
and really interesting at a time
that there really weren't
there wasn't
that kind of infrastructure support
for these kind of organizations.
I didn't. Feel. Hmm.
So that was very interesting.
(07:43):
So that was kind of
how I got to know you.
And then time passed and here we are now.
We're old
and i haven’t got any hair anymore!!
But the reason we're meeting up
now is because It's.
The end of November
in 2022 and the weekend ahead of us.
There is going to be December
and part of December is December
(08:03):
the third
and December the third is on Saturday
and that's the International Day
of Disabled People.
So I just thought I'd talk to you
about that for a minute,
although told you about that.
But hearing from you about that
because I think you know a bit about it.
Well,
so I, I, I was thinking about
(08:24):
this and I'm.
In.
The in York.
They are
here is disability week
one of the brochure.
So this is kind of been an initiative.
And then the
that is Pete who is the UK's.
(08:45):
First and finest.
Learning disabled Elvis impersonator.
But
that he performed in an event
we did a few years ago
called York Disability Pride
and So.
So I think so
he goes back,
(09:05):
he's got some history so it's 1992.
That the UN I think.
Is that right.
The United Nations General Assembly,
they say they say
the 3rd of December is to be known
as the International Day of Disabled
People or Persons with Disabilities.
(09:26):
And that and it's about kind of trying
to promote understanding.
About.
Disability and then that.
And what's interesting with
that is that they it's about
sort of
it's about respect and dignity
and independence,
I think, rather than just so it's it's
(09:49):
more about,
you know, understanding and equality
and inclusion than it is.
About.
Sort of understanding,
you know, different types of disability
type things about it's about inclusion.
And I think that that comes it
comes on the back of there being prior
(10:11):
to that, lots of sort of activism and
change. For.
Disabled people led by them themselves.
So
culturally.
It.
It was on the back.
Of
the.
Different ideas about kind of
(10:35):
how, where disabled
people should be supported
in, in, in, in the community or not
and in
and in different parts of the world.
They are different
people are different spaces.
And I think in the UK
we see
just prior to the
disability Discrimination Act
(10:56):
and the value in people white paper
that kind of
was pushing to close a lot of long
stay hospitals. And.
Segregated.
Living.
Homes type thing.
You know it's interesting
because the United Nations
(11:16):
as an overarching body does
seem to be the kind of organization
that you'd like that to happen in,
because they would be able
to spread the load
and spread the power of it
so that there are countries in the world
which are better than other countries
in the world.
I saw a program on telly,
I think it was last year
or the year before.
Anyway,
it was called the worst place
(11:38):
in the world to be a disabled person,
and it was a presenter called Sophie
Morgan, who's a wheelchair user,
and she went all around the world
and ended up in Ghana.
She decided it was the worst place.
And in Ghana, ideas about disability
are very linked in to religion.
So disabled
people are taken to churches
and people pray about them to kind of
get rid of the disability.
(11:59):
And if a woman gives birth
to a disabled baby,
the baby's taken down to the stream
and left by the reason for the night.
If they wake up in the morning
and the baby's still there,
it means the water spirits
have left the baby for the humans.
And that kind of
understanding of disability
is very different
to the understandings of disability
that we have in general in this country,
which, you know,
(12:20):
we are
we saying not the bad things
about this country.
And there are a lot of bad things
and things do need to get better.
And things are not anywhere near
equal between disabled
and non-disabled people. But
I think it probably is one of
the better places in the world
to live as a disabled person.
Yeah, I know how you feel.
Well, I mean, that the
(12:42):
you know, there's certainly a lot
you know,
there's certainly lots.
Of.
Positive things
if you kind of are comparing it globally.
And that is a
you know, that is a big challenge.
Is there any any
so it's right
that the UN should be
(13:03):
promoting it everywhere. And.
And
pushing those idea,
pushing ideas forward about like, you.
Know, how.
How people, all people can be included.
In.
All aspects of sort
of living and family life
and work and learning
and all those kind of things.
(13:24):
And I think as well that
the, the,
even within like,
you know, so you have different
people have different views
about disability
even within the same community.
And so even just lots of disabled
people are divided on many issues
(13:47):
about kind of, you know, learning like so
special education is a key
is a key thing
that can kind of divide people.
People believe that
some people believe that certain
support is better in a sort
of segregated setting,
whereas others believe.
(14:09):
You. Know, people.
Are more.
More generally
like it's about inclusion and, you know,
you should just be able to go to school
that's closest to you
and all that kind of stuff.
And
the, the, I mean, and,
and then also kind of around the issues,
(14:31):
issues relating to treatment arts
and and therapies and stuff like that,
you know. So there. Are.
And then kind of support as well.
We've seen in the UK
kind of some of the real,
you know, the tragic consequences,
you know, people taking their own lives
on the basis of how
(14:52):
they've been left to feel. Around.
Some welfare benefit cuts and,
you know, tough sanctioning.
And.
Getting much, much worse
now with the cost of living crisis.
Yeah,
the numbers of disabled numbers of people
who use food banks.
Yeah, we see mostly disabled people.
We.
You know, people with the lowest
incomes are all disabled people.
(15:13):
When the poorest section of the community
is all disabled people, it's
horrifying.
Yeah.
And the the, there's lots of.
Uh,
so.
So but if you think about some of the,
the gains that
(15:34):
disabled people have made
as one example of kind of
how social care
or independent
living can be achieved
and works really well.
We see around the
the, the provision of sort of direct
payments and how.
(15:55):
With the right support.
People can kind of live and participate
appropriately, you know, and I.
Think.
You know, that that level of
that aspect of policy and.
Support.
Has been kind of quite important
in the UK sort. Of.
Recent history
(16:16):
of including disabled people
within the community
and all the rest of it,
and supporting people to go about.
Their.
Their everyday lives.
You know, it's an interesting idea
is that the direct payments thing
I think is, you know, brilliant and
but it's not universal
and it's not universally applied.
(16:37):
And they don't know from authorities
all have different criteria
as to whether
you would be eligible for it
and whether they use it.
At the local authority level.
So some people... for example...
‘Person A’ living down here in Cornwall
might well receive it but ‘Person
B’ living in I don’t know where...
lets make somewhere up.
Mhm Up in the north
(16:57):
east might not be able to get it
for some reason or other
because of some kind of manageability.
But yeah.
And local authority finance as well.
Yeah.
And the support that exists
within the community that.
People.
Have access to in
order to support them
using direct payments.
(17:18):
Not an easy managing a budget, it's
not an easy thing.
And so, you know. You've.
Where there are supportive
organizations that know
and to help people do these things
it can work really well
but that that provision is also not.
Uniformed. By any means.
And there's a lot of variability,
(17:38):
you know,
even within areas that are close, close
across like London boroughs,
just to support for
that kind of thing is really,
really important.
When I am a long time ago
when I worked in an advocacy service
and that that kind of gets into
payment and.
Support. As well.
(18:00):
And remember the.
The.
My manager, Marie, she was asking
we were talking about
she was telling me
about International Day
and this was about, um,
and I think this might have been like
the first time I'd really come across it
and sort of understood,
stood the importance of it.
And she described it to me
(18:22):
as, as being like, you know,
it's about it's a,
it's a kind of a chance it's an event
that you can use
within your local community. To.
Just profile
and celebrate
some of the kind of
the great achievements
that disabled people have of of done
(18:44):
and, and, and by doing that, you show.
The world.
A bit
about how inclusion works
and the value of that sort of thing.
So, so what?
So we, we
so I've always been a kind of a fan of
trying to market with
something in various way,
(19:05):
even if it's just a small,
this small thing
like showing a film
with some friends to watch or
poetry is a, you know, he's a great way
to kind of get people
to sort of share things
about their experience.
And, and so
and one of the things that Mary said
to me
that sticks in my mind
(19:25):
was, was about this kind of issue
of the direct payments
and not how
how kind of some UK
people had really pushed for that
idea and had got a local authority to,
to, to kind of do something different
about the support benefit in it.
And so,
(19:45):
so that's a real achievement
to be celebrated.
Well, and
and I firmly believe
that the kind of that, you know,
it's one of many examples of things
that is good to kind of remember
about, particularly
around the third of December!
Yeah, I mean, disabled people very often
(20:07):
are at the front of things
and are pushing boundaries.
You know, we're used to doing it.
I often think this we're used to doing
in all areas of our lives
because, you know,
you wake up in the morning
and then from that point
until you go to bed at night,
there's things you're pushing
against all throughout the day
and you get a resilience from that.
If it doesn't grind you down,
you get resilience from that,
(20:28):
or you can get resilient from that
and you can get a bit of a fight
from that.
And so you kind of get used to that
in your daily life.
Everything's a bit of a struggle,
you know, I.
Use an.
Electric mobility scooter
and I've got a huge, quite big,
massive wall that I use
when I get out in the world.
And when I go out in the world,
suddenly I find that I'm doing
something alone, going from
A to B to meet my friend.
(20:49):
And there's a load of steps in the way,
so I'll get past it.
And so you get used to
that sort of fighting and aggro
in your life at all the time.
And so when you come
to our organizations,
I think our organizations
inherently have that kind of
sense of fight
within the organizations
because we have the organizations
of fighting
even more against
(21:10):
sort of social injustice and trying to,
you know,
level barriers and reduce barriers
for everybody, for individuals and for
kind of
disabled people as a group.
MM.
And so there's a kind of strength in that
I think in that,
so in those organizations for that.
And so
the International Day of Disabled People,
(21:30):
you know I'm a bit...
if you Google it, then it comes up
with all sorts of different things.
One of the sites that you've got,
you can either get the International Day
of disabled people.
You can also get
the International Day of People
with disabilities,
which gets my annoyance
goes up a little bit
because that’s
the whole social model thing about,
you know,
moving away
from those sort of terminology
because that's
a very medicalised understanding
(21:52):
where people have the disability.
So it's strange that
that there isn't a universal
use of the term anyway
across, across the whole thing.
Although I think that's to do is
just like local cultures
and, and any.
But I suffered with my views about sort
(22:14):
of how people
meet in terms people
to use although it can be it can be
it can be a sort of
like a signifier
to how people understand.
Or.
Where what people's
values really might be about.
(22:35):
Um.
You know, definitions of disabled
people or, you know,
that, that, that, that kind of thing.
Yeah. Language is a signifier.
Yeah. It's what it is, isn't it?
The language reflects
the way that we think.
So I think.
We have to
(22:56):
I mean, I think
one of the things, though, is kind of and
your first point was about people
talking about different
differently abled.
And all these new.
New terms were all kind, not new terms,
but kind of things that people
are always looking for.
A different way to describe it, I think,
and I think sort of some of the
(23:18):
is a challenge for
kind of inclusion, not
because if you kind of
if we all free ourselves from
labels, then,
you know,
we see our similarities and you know,
there are many of them with every across,
you know,
everyone can relate to one another.
We are firmly believed and yet and yet.
(23:39):
Finding.
Ways to describe your own experience
and sharing it,
sharing a kind of an identity.
On.
The basis of being different
from other people
is is quite important
and particularly important
if you need to build community and.
The.
(24:00):
Voice to kind of try and bring about
changes in.
Things, you know.
Creating an in-group and another group.
Yes.
That kind of thing we in that together.
Yeah so but then even within
I mean I think one of the things that is
people of kind of
(24:22):
the present the present
people are talking about people
talking a lot
about kind of the intersectionality
and where people experience
multiple forms of oppression
based on different,
you know, based on different
experiences
or aspects of their themselves.
(24:45):
And I think that's useful
sort of trying to understand,
you know,
how diversity is
and can be celebrated and,
you know, appreciated, but also
bring people, people together.
Yeah.
It was quite
we're quite a difficult group of people
(25:05):
to bring together
because it's always yeah.
Yeah. Definitely.
There's so many of us
and also we’re all so different!
So yeah, in the catagory of ‘disability’.
You got
people like me with an acquired impairment,
things like MS or whatever
it might be using electric scooter,
people with learning difficulties,
people with cerebral palsy.
You know, there's a massive list.
(25:26):
Yeah, it's
quite a difficult thing to unite us
all as a whole, as a cohort.
Yeah. And.
And I think that, that, that kind of is
so is some of it is
some of it's got right
then people can kind of just go off
and do their own thing and
and they don't, you know, that, that,
that kind of might not
(25:49):
that changes the
the, the, the, the experience for people
change changes the the
the kind of connections,
perhaps, that people have with.
With a
with.
A a group like disabled
people is in that term.
(26:10):
And so the International Day of people
with disabilities
or disabled people
as it as it works to achieve things,
there are other big achievements.
Well, I think I think
that, you know,
there's certainly a value in it.
And I think it certainly provides
an opportunity for people
to have conversation
and to go out on events and to kind of do
(26:32):
stunts that might kind of,
you know,
build, build community, build awareness.
So without it,
I would never have heard about the
your your Elvis impersonator.
So yeah.
And he's very good is.
Very. He's there.
And yeah.
(26:53):
So that that but it is
but I think also
when people hang on to so so in York.
There are.
This year has been interesting
because you've got some some of.
The.
There's been more attention by
businesses to participate
(27:13):
and to kind of think about
so so I know that kind of. The.
The there's a few quite successful
I think one successful hotel in.
The in the.
In the city
that has actively promoted York
Disability Week to It's kind of
within its venues and within
(27:33):
like staff group and stuff like that.
And.
And so who is it doing that
group, Disabled People's Organization.
So, you know, York Disability Week.
Came.
About after after a few years ago, me
(27:54):
and some colleagues from York Independent
Living Network
got some money to organize an event,
and we called it York Disability Pride,
and it was like a bit of a cabaret.
So we had some I think we had
Laurence Clarke [Comedian & Disability Rights Campaigner]
Came and performed, and then
we had a variety of other people.
(28:16):
So the idea he was like
sort of more national,
had a national profile,
and then we had quite a local group.
So there was dance and musicians and play
and then some poets
and, and then and also Pete aka..
Elvis did a slot as well
(28:37):
at one of the events as well.
And then that, that, then.
That then sort of.
Formed into.
Uh, I.
There was a kind of working group
for that and that, that developed
because and of to have a week.
(28:57):
So York is full of kind of lots
of different weeks here
because of its profile.
So it has your design week,
it has the York Walls
festival and you know, it's
just full of it. There's lots and lots.
I actually think probably anywhere
there's been a lot more attention
around using these
these events to within kind of community
(29:19):
work or whatever to to profile stuff.
So, so that
so York has
lots of different things that go on and
it also
York calls itself...
York declared itself
a human rights city a few years ago.
(29:40):
So I mean, it's
some of that some,
some of that's all about population
density, isn't it.
Because you know city. Yes.
Well we're not.
Well it got York Minster...a
Cathedral essentially.
So York is a city whereas there's
probably more people
who live in Tower Hamlets
than than live in York.
So you know, that is it's
(30:03):
it's location used to be York
used to be the capital.
It was the capital of North So,
you know, a long time ago.
But so York Disability Week
was kind of very much about trying to
celebrate
International Day and Disability
History Month.
(30:23):
So it was kind of a way
to try and promote that.
And then that turned into, Oh, let's do.
A let's.
Do a disability week.
And that way you could try and engage
lots of other organizations
to take part in it.
So some of the things
that are happening here this week are
the so. There are.
(30:43):
There like there's like Discos!
and then there's, there are
there's sort of workshops
and some of these are quite practical.
So there's driving
with a medical condition.
So really merit
centrism of driving mobility
and they're kind of showing how it works,
which is kind of a bit of a useful thing.
(31:04):
I actually know
someone just recently
whose is about to go through their
a medical
driving reassessment type thing.
So there's that kind of stuff
and then there's
the workshop on making your website
digitally accessible.
And then
(31:27):
it's poetry.
Yeah, poetry for all.
And then something
that I've been involved
with is an exhibition.
Of.
20 years of speaking up, self-advocacy
and learning difficulties,
a history of York people
first in photos and easy read.
So this is a... a
photo and text
(31:48):
exhibition that is at the local library
on these.
It's. A it's a sense
that there's 40 panels
with the telling history of York
people first
using a lot of their photographs
from their archive.
So some of them are.
Of.
(32:08):
Course, they started
they came out of like a
sort of a day centre
So some of the images are of
what used to happen in day centers.
And then some of it is about
kind of getting,
getting get more active and people
moving into their own homes
and stuff like that
so that it's interesting.
(32:30):
So there's this
whole load of things there.
So who is run by now?
Is that so?
So York is a human rights city
you might say and that they...
so York Disability Week then.
Out of
a previous event
what happened was that there was a forum
York's disabled peoples’
(32:50):
forum was established and then they
and so they're connected
to the human right city
and they run the York Disability Week
now so it's comes back from that.
So it's quite amazing.
No amount of stuff that's going on there.
I mean, I'd say I'm surprised about it.
I wonder whether there's
similar amounts of activity
going on elsewhere across the country.
(33:12):
Yeah, I mean, it
varies probably depends on it depends on
like sort of who's around and
and the kind of the infrastructure
of the local community.
So I know that actually there's something
I don't know if this is linked to
the International Day,
but the People's Museum in
(33:33):
Manchester there have just
done an exhibition on the
history of disability campaigning.
So that that's that's just opened.
I think.
And there's lots of there's
lots of kind of
reference to campaigns and.
Various stuff.
Because at the same time it's
(33:55):
of course, Disability History Month.
Yes.
Which interesting
isn't a month
like the 1st of November,
it's the 1st of December
16th, November
the 16th of December or so. Yeah.
I and I wonder whether
because I think
it was a disability in education
initially
(34:16):
kind of
promoting Disability
History Month as a, as a resource.
Learning.
Resource for schools and education.
Yeah. Yeah.
So I think it might be
to do with the school year
or the term times.
Then as to.
Why it goes like that,
I don't know that it's
(34:36):
might that is my guess.
Because what's
the name of the
because there is such an organization
does name.
Richard.
Richard Reiser
as I said Richard Reiser who used to be
who used to be on the international panel
of Radar
back in the day,
the Royal Association
for Disability and Rehabilitation.
So he was all flitting around the world
(34:57):
during all these meetings,
and he was the International Committee
for that
and he's now,
I guess, doing the UK
Disability History Month.
I think there's a website and
I think it chronicles activities
through that doesn't he.
That taking place across the country.
Yeah.
But yeah I mean that's another thing
the whole
(35:18):
disability history month
it's something to to celebrate,
you know, the history of disabled people
in across this country
and across the world really. But yeah.
A Disability History. Month.
Yeah.
So he is is
is really
I mean it's an important thing it's
also just thinking
that disability has a history
(35:40):
is interesting
to to to look at and I think.
That you know.
Museums and archives have started
just being aware. That.
History
disability does have this kind of
incredible history
really and should be kind of paid
(36:01):
attention to.
I know that there is a
there is a national sort of Disability
Arts Archive.
I don't know the name for it,
but I'm aware that that that kind of
and then increasingly,
you know,
existing collections have sort of
(36:21):
turned their attention
to trying to understand what.
What, what.
What they can see in their collections
through a disability lens.
Although, you know, that's a
is an interesting, interesting thing to.
To to.
To find because where do you. Look.
Particularly
because a couple of hundred years ago,
(36:42):
the terms we use today
would be very different
and people
sort of focus
was completely,
completely different.
So you might not even know where to.
Look for.
For disability.
Yeah.
I've always
I've always been very aware
(37:02):
that there isn't like
a museum specifically devoted to it.
So I think you can easily
fit a museum full of stuff.
This was the history is like you say,
it's change
and it's not even a case of 100 years
as terms,
you know,
that were around 30 or 30 years ago
that just don't exist any longer.
There is the national charity Scope
(37:22):
which changed its name and was it 94, 95?
And until that point, it was no,
it was called the Spastic Society.
And I remember when you worked
at the Disability Lib project,
I went up and saw the chief
executive of the day. Yeah.
And he and I.
Had a couple of the plastic figures
that they used to have outside their.
Shop.
(37:43):
Yeah.
The little girl with the begging thing
hanging out, holding out
to collect money for disabled people.
And then there was
another organization, the
the acronym for the Crippled
Child, Gemma, that I always remember them
as a little girl, that you put money.
That's all for a head, I think.
Yes. Yeah.
And you know, these things,
we very quickly
(38:03):
forget how quickly
language changes over time.
Yeah, totally. Totally.
I mean, a lot.
Of diffuse
the way that we deal with disability.
So we were all,
you know, back in the day,
somebody like me with Ms.
on a scooter,
I would,
you know, before scooters,
before wheelchairs, that's like 1950s,
even 1940s.
I'd have been in bed all day, every day.
(38:26):
Yeah.
Even tiny grey-thompson on the radio.
And she is talking about
if you came back
from the Second World War
with a spinal injury and, you know,
there were no wheelchairs around
at that time.
So if you came back from
the Second World War
with a spinal injury,
then your life expectancy was two years.
Yeah, but life
expectancy now is about the same
(38:46):
as everybody else.
So, you know,
things have massively changed
even within my parents lifetime.
Yes, totally.
Totally remarkable.
How much that different that
and also kind of
with that increased life expectancy, the
you know, the numbers of disabled
people have grown and grown and grown.
(39:07):
So kind of the might be
that there's be a.
B, B and not.
Not one day may be
if we keep going
the way we are going might
one day not be the minority.
But we must all go away.
I mean, the kind of,
you know, k
that was terrible
like two thirds of no more than two
thirds of people who died from COVID
(39:27):
were disabled people.
Yeah,
but then a lot of people who got COVID
are now experiencing long COVID.
Yeah, my mum's next door
neighbor in Penzance.
She's a nurse, a young us in our forties,
and she got COVID and she's, she got it
like six months,
eight months ago,
and she hasn't got out of bed ever since.
She's just completely laid low by it.
(39:49):
Yeah.
So that long COVID thing.
Yeah. Yeah.
And that, you know, that's,
that's, you know, that's not going to.
go away is it? That....
I mean watching all the terrible stuff
that's going on in Ukraine,
the Ukrainian war, this
(40:12):
giant machine creating disabled people,
isn't it?
It's just it's
what's going on over there.
Yeah. But yeah.
So the history of disability, it's,
it's an ongoing story, basically.
It's the idea around
how this disability arise
and how does it come from
the changing ways that it happens
and the changing attitudes
(40:33):
towards disabled people.
And it was a bit in my mind
I said it to you earlier,
I think this is probably one
of the best places in the world to me
as a disabled person,
it very much depends on who you are
and where you're from and your background
and your impairment and your income.
So there's a really awful story
on the news last week
(40:54):
about a mum who has two children
and she called local authorities, called
the social services
because her oldest child, who's ten,
was acting in ways that she
didn't know how to deal with.
And she
she called the local authority
just for some help.
Hey, look, can you give me some advice?
Can you give me some help?
What can I do in these situations?
(41:16):
Because he's hurting his younger
brother...
He's exhibiting
lots of abuse
that she didn't know how to deal with.
They said,
we'll take them away from an assessment.
And they took him away for an assessment.
And the assessment
was more than a hundred miles away
in a specialist hospital.
And she hasn't
physically touched him since.
He's in not bed in a
(41:36):
in a room with nothing in it,
with a mattress on the floor
and a few toys, and that's it.
And he's just left him
there, locked up all day, every day.
It's not good.
Is it.
Horrible?
And then the Winterbourne view
and all of that kind of stuff.
Yeah.
So, you know, although this is a country
where you can do things like live
independently
and can get direct payments,
(41:57):
there's also a whole section
of the community
which is completely institutionalized.
Yeah, well.
That won't change any time soon.
How cheery we are.
Yes, exactly.
Well, that's why you need to book and.
Pete...
Elvis in.
Our Elvis impersonator from your book.
Can you hold the book up again?
(42:18):
Because I just think that's really worth
a guide.
I just think that whole notion
about disability pride
is something that I'm
very interested in as an idea,
and it's something
that we need to start to develop more.
I think the sense of pride in ourselves
and who we are
and what we do and how we do it.
Yeah. And
how that can be a positive
impact on the world.
(42:38):
Yeah, totally.
And, and that,
that is, is a challenging thing
to just put pride next to disability
because people don't necessarily
find that an easy leap to make
if you've had a lifetime
of being criticized or undervalued.
(42:59):
Or
or or.
You know, sort of mocked
or just left out,
left to be on the outside,
you know, in in in very subtle,
sometimes very subtle
everyday ways that become.
..
Mean, a massive, massive
points of frustration.
(43:20):
Yeah,
starting at a very early age
time with the education system.
Yeah.
But, and the pride is not and so equally
part is just about being okay with it,
just as it is
as it stands,
without having to be a superhero
or to kind of celebrate achievements.
(43:41):
It's it's not, not like to kind of be,
you know,
despite this, I did this, you know,
you know, all kind of mountain
or whatever, you know, like just,
you know, just making a cup of tea
is a is a,
you know, is a big step or, you know,
those those things should be
(44:03):
should be celebrated as well.
It's a fine line between getting
between sort of saying,
look what I can do, but
and isn't that wonderful
considering my starting point?
But, you know, like just just that
(44:25):
I think that kind of
there is a tendency for
for us all to want to see heroes,
I think.
And and that sometimes works against us
because we can't be
we can't be.
We can't be normal.
(44:45):
We can't be regular citizens. Yeah.
That's what's difficult.
I think
we should have started
this whole conversation, and I didn't...
and I apologise by saying number 1:
look behind me! What a mess!
If you can see behind me
there are my grandsons pictures
on the wall.
And a tractor I can see there.
(45:06):
You can see the tractor,
see behind you is loads of stuff
hanging out and drawings and stuff.
What's, what do you do?
You do in all of that?
So.
Well I, I draw ..
I doodle, I call myself a doodler!
And so behind me are various.
There is doodles.
(45:27):
I'm working on.
So I'm.
I'm.
I did one recently.
Let me show you!
Just bare with me one sec
Yea they are fabulous doodles!
I saw your doodle that you did
for the Alliance for Inclusive Education
about the history of disability activism.
(45:49):
I thought that was great.
Oh, yeah.
There's that one.
There is, there is, a um..
So I.
Can't get it right.
Just bear with me.
Yeah, it's not great
television!
haha You get the idea.
Yes.
I will show you around the room though!
(46:10):
Oh, brilliant!
Look at that!
So, there’s
Uh so there’s
I am.
So yeah so that is
that that is that is one on...
oh actually, strangely...
(46:30):
I really
like this one (46:33):
here’s one
about Direct Payments. Oh okay.
Well it was from a
workshop I was involved in.
This is The Talking. Guide.
Yeah I see.
I saw
once I went to a meeting with,
you know, sitting next to you
and I saw your notebook
and my notebook is just full of scribbles
and words. Whereas your notebook...
it's like that. And it.
(46:54):
Is great. Yeah.
Different ways of understanding words
and different ways
of understanding concepts.
Yeah, totally spontaneous.
Yeah, totally.
And, and actually the.
The, the.
The piece that I've just
done with York
people
first about the
history, their history in an easy read
format is
trying to,
trying to
(47:14):
tell a story, trying to tell their story
and their their achievements
and the things that they they've
they've made happen in the last 20 years.
And I hope that maybe we might be able to
put some of their stuff into
the local civic archive
(47:36):
because they are an important group.
But they're, they're
getting that's getting.
The.
There's some work to be done to look at
how archives can be accessible.
I think.
That's a.
Yes.
And, and
(47:57):
then I think like, you know,
kind of understanding in
recent times there has been a kind of a.
More of.
An activist
voice.
For. Disability in that...
(48:18):
that is, you know, all about
what the International Day of Disabled
People is about.
It is about kind of profiling
the human rights of disabled.
People.
That's really neat
because you've just
ended the conversation,
I think in a really rounded way.
(48:39):
So we started off talking about that
and we kind of come back
to ending up talking about that!
Yeah.
That was brilliant.
Thank you very much for your time.
I really enjoyed
having a conversation with you.
Yeah, me too. And
I'll press the pause button.
Yeah.
Allow contact to you again,
maybe at some point in the future
and we'll do it again
about something else.
(49:00):
Yeah, that'd be great.
Most fun. Stay warm.
Yes, you too!
And it's going to get really cold
because it's about to be winter.
..
Yeah.
The real winter tomorrow isn't it?!
It is!
Well good luck and good
luck in York in the winter!
Thank you very much. Alright mate!
See you soon.
(49:20):
Hasta la vista! Bye!
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