Goodbye Judy, and thank you

 

10th March 2023

bbc.co.uk/accessall

Access All – episode 43

Presented by Nikki Fox and Emma Tracey

 

 

EMMA-         You’ve mentioned special slings. What’s this I hear about two men putting you into a special sling?

NIKKI-           I got a flight for work, and you know when you get off the plane, you know when they get on by doing a lift to the aisle chair, the aisle chair to the chair? A lot of physically disabled people will know exactly what I’m going on about.

EMMA-         You may have mentioned it once or twice before as well.

NIKKI-           I may have mentioned. Sophie Morgan’s doing an awful lot of campaigning around it at the moment. The transfers are pickly. They did something new this time; they put a sling around me.

EMMA-         They’re pickly because you’ve got one person with their hands one part of you and one person with their hands the other part of you lifting you from one chair to another. That does sound pickly to me.

NIKKI-           I know.

EMMA-         Does the sling help with that?

NIKKI-           And sometimes it gets a bit handsy, if you know what I mean, Em.

EMMA-         So, how do they use it that’s different to the manhandling?

NIKKI-           Hands [laughs], yeah. So, you still have the same formation, one at the back, one at the front, but they get this sling and they don’t have to go under your butt, they go under your legs and then they go around your back, and then they connect the strap that’s under your legs to the strap that’s round your back. If you look at it you’d be like whoa. But Em, it kind of helped actually. They went one, two, three – they couldn’t really agree on what number to go on, it was funny. In fact because we had to wait half an hour on the plane before they actually arrived, and the pilot came out and he nicknamed them Morecambe and Wise.

EMMA-         Oh ouch.

NIKKI-           It was like one, two, go…no, no, on three, no!

EMMA-         Does it look like a piece of material or is it like straps?

NIKKI-           It’s literally just a piece of material, Emma. I thought it’d be like a hoist thing, you know. Because obviously there are some brilliant campaigners trying to sort hoists to fix transfers.

EMMA-         But this is low, low, low, low tech.

NIKKI-           This is a sling.

MUSIC-         Theme music.

NIKKI-           It’s Access All, your weekly dose of disability and mental health. I’m Nikki Fox and I’m in London.

EMMA-         And I’m Emma Tracey and I’m in Edinburgh.

NIKKI-           Now, no one can say that disability news is not varied, Emma Tracey. On this edition we have a friend to remember, a blind drag queen, and some disability stats to peruse.

EMMA-         Highs and lows Nikki, highs and lows.  

NIKKI-           Look for Access All on the BBC Sounds app, subscribe, and we will drop on your device the moment a new edition goes live.

                       Judy Heumann, known to many as the mother of disability activism, has died in Washington DC aged 75. Now, Judy is probably most famous for organising a 24-day sit-in of 150 disabled people at the Health, Education and Welfare building in San Francisco in 1977. She was also one of the stars of the 2020 Oscar nominated documentary Crip Camp, which starts at a summer camp for disabled teens where Judy was a counsellor, and finishes by painting a portrait of a disability rights movement led by Judy. Here to remember Judy Heumann and celebrate her life is her friend, and ours – although I haven’t met you yet – it’s Lawrence Carter-Long, joining us from California, aren’t you, Lawrence?

LAWRENCE- That’s correct yes, and long overdue.

NIKKI-           Now, Lawrence is a lifelong disability activist, with a particular interest in disability on film. What did Judy mean to you?

LAWRENCE- Well, Judy, what she often did, as you listed, was ground-breaking. But how she did it was even more powerful I think. She’s often on the frontlines, trail blazing in her advocacy, whether it was founding a group called Disabled in Action in 1970 in New York City, or winning her lawsuit against the New York Board of Education, becoming the first teacher in the state to use a wheelchair, when the board had claimed that she would be a fire hazard to herself and to students. She was ground-breaking as the deputy director for the first ever Centre for Independent Living from 1975 to 1982. All of that is just sort of astounding when you stack it up.

                       But what I remember most about Judy was that her focus was never on her life or her work or her impact. When you talked to Judy Heumann she was always much more interested in what you were up to, what you were working on, what you were dreaming of. I’ll give you an example: when I first met Judy was 2012. I was already working for the federal government, she was at the State Department, I was at the National Council on Disability. We were at a fundraiser for President Obama’s second administration, and I had just done a series with Turner Classic Movies looking at the history of disability on film. And so there I am walking into the room and I see Judy Heumann, and of course I’m awestruck. I don’t know what to say. I’m seldom a speechless person but I didn’t quite know how to start a conversation with Judy Heumann. And all she wanted to talk about, I wanted to talk about the history and the working in government and how that was and what I could learn, all she wanted to talk about was how they could get me on as a regular on-air personality on Turner Classic Movies.

NIKKI-           Oh, love her.

LAWRENCE- She told me three different people that I should talk to. She told me her favourite film. Google her name or search social media the last few days and you’ll see this flood of photographs of Judy taken with people all over the world.

NIKKI-           What a woman. What’s the public reaction been to her death, Lawrence?

LAWRENCE- A few things. Those who were blessed enough and lucky enough to get to know her are just sort of stunned and shocked. And those who didn’t I think are always somewhat astounded as to why they didn’t know her story or why they hadn’t heard about her work, why this isn’t in the history books. And so I think that has created, along with Crip Camp a few years back, this new groundswell of interest in disability rights and disability history, and another on-ramp for people that they hadn’t had before.

EMMA-         You mentioned so many of the things that Judy achieved at the start of this conversation. One of the things she’s most well-known for was that spectacular sit-in in San Francisco. We need to talk a bit more about that in a minute, but first here’s a clip:

JUDY-           There will be more takeovers of buildings until finally maybe you begin to understand our position. We will no longer allow the government to oppress disabled individuals. We want the law enforced. We want no more segregation. We will accept no more discussion of segregation. And I would appreciate it if you would stop shaking your head in agreement when I don’t think you understand what we are talking about.

NIKKI-           Feisty, I like it.

EMMA-         Yeah, so powerful. So, that’s Judy’s voice in 1977. And they’d been sitting in that building for quite a long time, and some government officials came in and that’s Judy speaking to them, isn’t it, Lawrence?

LAWRENCE- Absolutely. And that started as I think ten different protests around the country. And they went in to have a meeting with one of the administration officials in the office and just decided they weren’t going to leave. And so what started as a protest became the longest occupation of a federal building in the United States in the history of the United States. So, you’d think that in and of itself would require a place in the history books.

NIKKI-           That’s got you quite emotional, hasn’t it, Lawrence?

EMMA-         Yeah.

LAWRENCE- The thing about that clip that really grabs me is that Judy is connecting the dots in everything that she’s saying. She’s saying we’re not asking for anything special; we’re asking you to follow the laws supposedly that you’ve passed and to enact the regulations of Section 504 of the Rehab Act. There’s that old adage about speak up, even though your voice may quiver, right, even though your voice may shake. And that’s exactly what Judy was saying there. People were condescending or they were shaking their heads or they were nodding affirmatively, and she was saying no, you truly don’t understand. And even in that moment pushing them for more and pushing them to be the best and to do the best that they could to really follow those laws.

EMMA-         Judy went to work for the government then?

LAWRENCE- She worked under the Clinton administration federally. And then years later came back and worked for the Obama administration.

NIKKI-           She didn’t do much, did she, this Judy? My goodness me! In 2020 Judy was the standout star, wasn’t she, of the Netflix doc Crip Camp, which you’ve just mentioned previously. And the Obamas were executive producers. Tell us about that film.

LAWRENCE- The summer camp, coming together of young kids in New York State with various disabilities who often before had not been connected to other disabled people. You start talking to the person across from you or somebody in camp at lunch or somebody at one of the other activities, and you realise that wait a minute, I am not alone. And there was the solidarity that was formed. What was supposed to be a recreational activity radicalised them in some way because they were able to share those stories with each other and grow and learn from each other. And I think the skills that Judy learned as a camp counsellor at Camp Jened informed the path that she had for the rest of her life. And it’s a story that I think Crip Camp told beautifully well.

NIKKI-           And of course it was Oscar nominated, wasn’t it, as well?

LAWRENCE- It was Oscar nominated, that’s correct, which is another historical fact for a film co-directed by a disabled person.

NIKKI-           Yes. What do you reckon the US would look like for disabled people without Judy?

LAWRENCE- I can’t imagine you’d be talking to me right now.

NIKKI-           Really?

LAWRENCE- She blazed so many trails and helped open so many doors and made it possible for people like me to see themselves in a much different light, not only as disabled individuals, but as part of a disability community. And I think it’s that helping people make that connection, both for themselves personally, and then connecting to a larger group of people in solidarity is probably her greatest legacy.

NIKKI-           Ah.

EMMA-         Well, I think we should finish with Judy’s voice. And this is a recent clip from her 2017 Ted talk:

JUDY-           How many people does it take to stop a bus in New York City when they refuse to let you on because you’re in a wheelchair? One, that is the right answer. [Laughter] So, what you have to do though is take your wheelchair, saddle in the right place, right in front of the steps and give it a little push underneath, and then their bus can’t move. [Laughter and applause] Any of you who want to learn how to do that talk to me after this.

NIKKI-           She sounds like she had a wicked personality as well, Lawrence.

LAWRENCE- One of the first thoughts I had when I heard that Judy had passed was that I’d miss her laugh. She always had that laugh and she always had that little wink and that little mischievousness about her. There she is giving the Ted talk, and even in the Ted talk she’s giving practical skills on how you can stop a bus if you absolutely need to.

NIKKI-           In a brilliantly funny way.

LAWRENCE- A brilliantly funny way.

NIKKI-           I would love to have met her.

EMMA-         Yeah, me too.

NIKKI-           Absolutely. Thank you so much for joining us today.

LAWRENCE- Thank you.

NIKKI-           Now, next we’re going to talk about the difficult subject of suicide figures, so if this is something that you are not in the right head place to listen to then fast forward ten minutes. But make sure you come back.

                       New figures suggest disabled women are four times more likely to die by suicide than women who are not disabled. And disabled men are three times more likely to take their lives than men who are not disabled. The group with the highest rates of suicide in England and Wales are disabled men aged between 40 and 50. This is according to the Office for National Statistics. The results are pretty upsetting, although I think a lot of disabled campaigners won’t be surprised by the findings. So, Emma, how did they come up with these figures?

EMMA-         So, this is the first time that the ONS has calculated suicide rates across different minority groups, like disability, ethnicity and religion. And what they did was they linked the 2011 census data with death registration data. The ONS found that disabled people had much higher rates of suicide. So, these numbers have been rounded, Nikki, but in every 100,000 people 16 non-disabled men took their lives compared with 48 disabled men. And in women four non-disabled took their lives compared to 19 disabled women.

NIKKI-           Put like that you can understand it a bit better, can’t you? Now, we’re going to try and analyse these figures a bit more in a second. But I think it’s very important to know at this point before we continue that if you do have suicidal thoughts there are lots of resources and support available at bbc.co.uk/actionline, which has the contact details of loads of suicide prevention charities. So, please do take a look.

                       Now, we are joined by Fazilet Hadi, head of policy at Disability Rights UK. Fazilet, it’s lovely to speak to you today. Now, you’re going to talk through these figures with us and give us a bit of perspective on them. The figures on their own don’t explain why disabled people are more likely to die by suicide. In your opinion, Fazilet, what are the reasons for these figures that we’re hearing today?

FAZILET-      These figures are extremely sad, and whether you expect them or not, they still are the tragic face of, if you like, what systemic inequality looks like for individual people. I do feel really, really sad when I think about these figures. They’re not just statistics, they are real people. So, I’ve kind of got four reasons when I thought about it: the first one was around poverty. We know that disabled people are some of the poorest in the country. Joseph Rowntree Foundation finds that out of the 14 million people in poverty 3.5 million are disabled, and another 3.5 million have disabled people living in the household. And we know that having little money when you can’t make ends meet that really does put a pressure on you. It adds to your anxiety, your mental health issues. And we know now, I know this study was done between 2011 and 2021, but if anything this has got worse with the cost of living crisis with energy and food and housing costs spiralling. So, I think poverty is a big issue.

                       The second issue I think is the benefits system, and this is where it is important that many disabled people either don’t work or work with long periods of unemployment or work in low-waged jobs. It means that a lot of us touch this benefits system and there’s so much evidence about how sanctions, the punitive nature of the benefits system, we know stories about claimants being found in their houses weeks, months, years now after benefits were stopped etc.

NIKKI-           Yeah, because campaigners have been very vocal about this and disabled people for some time now, about that link between benefit cuts and austerity and people ending their lives.

FAZILET-      Yeah, I think we need to link them to that other evidence. Unfortunately hundreds of people have died who have been benefit claimants and lost their lives. And we’ve got a lot of coroner evidence now looking at how they fell through the gaps and how none of the services really supported them. Which takes me to my third issue, which is the deep cuts in public services there have been since 2010. I’d particularly like to underline the cuts to social care, and with disabled people getting less care, many disabled people either getting no care or inadequate care, or having to pay ever, ever increasing care charges. Cuts to health services generally, but I’d really pick out cuts to mental health services where we know that there’s appalling under-provision of community support, and people are just being forced into crisis.

NIKKI-           And did you have a fourth point as well?

FAZILET-      Yeah, my fourth area was really whenever ONS interviews people about wellbeing, about loneliness, about isolation, disabled people always come out worse, always. So, I think this whole issue about being more isolated, and it does play with the poverty point, if you can’t afford to go out because you’re trying to heat your home, trying to eat, I think this whole isolation issue and loneliness once you add it to the other things like poverty, lack of services, it’s a perfect storm for disabled people.

NIKKI-           What you’re saying really, Fazilet, is it’s a cumulative impact of everything, isn’t it?

FAZILET-      Yeah. And in the end I know it will be personal decisions that disabled people make, it will be very personal. It’s very hard to generalise. So, every suicide is so unique the reasons for it. But I think some of these areas are playing into that decision.

NIKKI-           Do we have to be a bit cautious with these figures, though, Fazilet? Because the ONS are linking the 2011 census data with death registration data. And I know from work in the past that the death registration data can be a little bit dubious. And also people in the 2011 census might not have self-identified as being disabled. So, can we really trust these figures?

FAZILET-      I mean, I don’t think we need to be cautious. I think the gap is so wide, but even if it was ten degrees less it would be absolutely appalling. I personally think that the figures are what I would expect given, as the UN found in 2017 when it came to the UK, systemic violations against disabled people’s human rights. So, to me the figures are a consequence of UK public policy which has not prioritised disabled people for quite a long time now. We wouldn’t have had figures during the COVID pandemic if it wasn’t ONS using the 2011 census figures. And I agree with you that, I’m not a statistician, there must be lots of complexities, but I feel so pleased that ONS is surfacing some of these issues. And I actually don’t mind if technically we’re a few points out here or there, because I think they’re giving us a very clear indication of the inequalities being faced and injustice being faced by disabled people every day of the week.

NIKKI-           For a lot of campaigners that have been talking about these issues for such a long time they’re kind of a way of backing up almost what they’ve been saying for some time now.

FAZILET-      Exactly. This is very, I hate to say this, but this is very good evidence that we’re not over-egging it. Disabled people really are the hardest hit across poverty, lack of public services, low incomes, punitive benefit processes, loneliness, isolation and wellbeing rates not being as good as they should be. It really does support all that analysis.

EMMA-         Thank you Fazilet. We also heard from Jackie Morrissey from Samaritans and she said, ‘The higher rate of suicide in people with a disability is deeply concerning. We need to work with the disabled community to understand more about this and ensure that the government’s promised suicide prevention strategy comes with proper funding in order to tackle the inequalities. Lives depend on it. It is crucially important to remember that suicide is not inevitable. It is preventable, complex and rarely caused by one single factor.’

NIKKI-           Now, the government do have a suicide prevention strategy. And although they scrapped the ten-year mental health plan a few weeks ago, it says they remain committed to this policy; the Department of Health and Social Care tells us they’ll publish details later this year. They also gave us this quote, they said they were investing £57 million in suicide prevention through the NHS long-term plan, and all local areas now have a suicide prevention plan that we would expect to consider the needs of people with disabilities.

                       I think it’s also important to repeat that if you’ve been affected by this topic visit the BBC Media Action Line pages because you’ll find lots of support available. And, as always, we want to hear from you. What do you make of these figures? Get in touch in all the usual ways:

CLIP-             Send an email to nikkiaccessall@bbc.co.uk.

NIKKI-           Sequins, a bit of sauce and sparkles, drag queen culture has exploded in popularity over the past few years, and it’s no longer just something you see in late night clubs or in Vegas. Now, we are with someone who’s at the forefront of the growing UK disabled drag scene, it’s the fabulous Ebony Rose Dark. Hello Ebony.

EBONY-        Hello. Ebony Rose Dark, your VIP cabaret artist. And for those of you who don’t know, VIP means visually impaired.

EMMA-         I am told that you are in the full drag ensemble and look absolutely beautiful.

NIKKI-           Phenomenal.

EMMA-         Can you talk me through your look today?

EBONY-        I am a black Caribbean cabaret dance performance artist. And I have got curly black hair, and I’ve got a rose on the top left-hand corner of my forehead.

EMMA-         A tattoo rose?

EBONY-        It’s a clip-on rose.

NIKKI-           On the top of her head, Em!

EMMA-         Well, she said on her forehead.

NIKKI-           A tattoo!

EBONY-        Sorry, clarity is important I know! [Laughter] The make-up, the make-up is gold around the eyes, red lips, there’s a bit of gold glitter. I’ve got eyelashes on.

NIKKI-           For someone who shaves their face every Sunday – shave your face Sunday – to create that texture so that make-up goes on better, is that the same thing for you? Do you do that?

EBONY-        Oh yes, well I spent a whole hour in the bathroom this morning. It’s taken years to discover what works for me. Leave it three or four days it’s what I call a double process shaving. The electric, which removes the top layer of hair, so it leaves you with stubble, and then going in – which not everyone likes, and I know why, because there’s a chance of cutting – but for me it’s all or nothing and I have to go in with a five blade, and I want that smooth silk finish so that when the make-up is applied that it’s light and it’s not so bad because I know that I’ve put the work in to get that finish. If it’s heavy well that’s fantastic; heavy make-up is amazing because it covers everything.

NIKKI-           I think we’ve proved, Emma, you can talk about hair removal all day every day.

EMMA-         Yeah, but let’s talk about something else now though.

NIKKI-           Yes. Let’s talk about how you got into becoming a drag queen.

EBONY-        The opening scene, act one, right: they’re not drag queens; they’re cabaret girls. And it’s in this bar which looks quite swanky, and they’re all dressed up to the nines. And I thought that looks amazing, I’d love to do that. That stayed with me.

NIKKI-           I love that. I know that scene. Whoopi’s on stage, isn’t she?

EBONY-        That’s right, yeah. [Singing] Heatwave. So, that was the first thing. And then of course the movie Kinky Boots came out. Oh god, that really took me over the edge.

NIKKI-           Too much to handle.

EBONY-        I was like, oh my god, this is amazing! And the third final straw was when Priscilla Queen of the Desert came to London, and I went and I thought right, I really want to find out what the process would be. At the time my dance teacher was performing at the Royal Vauxhall Tavern.

EMMA-         So, that’s a really famous gay bar in Vauxhall.

EBONY-        The likes of Lily Savage performed there. And the next minute I know I was emailed and asked if I would like to perform, and that’s where it all started, 2011.

EMMA-         So, your act is quite dance focused?

EBONY-        From one moment you’ll see me doing just a song, and the next moment you’ll see me moving around on stage and speaking at the same time.

EMMA-         So, moving around on stage, I mean that’s interesting to me, because you spin me around a few times I struggle with where things are, where the edges are.

EBONY-        Yeah.

EMMA-         Have you found strategies to do that? I know you can see a little bit.

EBONY-        So, for me it’s all about having that recce prior to going to any venue, big or small, theatre or pub, to let the people know there that I need to get into the space before the doors open, and I’ll need someone to show me around the stage and to tell me what might change. For example, will there be speakers on the stage, is there a need for that, is that essential. If I’m dancing I’m very concerned with any obstacles that are left from the act before me. And I always ask for a clear stage, and also for white tape to be put around the stage, and sometimes even centre of the stage if I know I’m moving around again and I want to know. I’ll say, double over the tape so that I can feel that beneath my feet.

EMMA-         Yeah.

EBONY-        So, there’s a whole thing about marking the space, mapping it out and practising on the stage. Because for example I was on a stage recently, very narrow.

EMMA-         Why did you – you get to choose your name I guess when you become a drag queen – why did you choose Ebony Rose Dark?

EBONY-        That’s a good one. There’s that thing about playing with that, the dark side, art being a drag queen, cabaret artist.

NIKKI-           I bet you could knock out a tune, eh? Your speaking voice is so nice.

EBONY-        A tune? Yeah.

NIKKI-           What’s your favourite?  

EBONY-        What would I go for? I’d probably go for a Billie Holiday, because I like a bit of Billie.

NIKKI-           Ooh yeah.

EBONY-        [Sings] I fell in love with you the first time I looked into them there eyes. And you had a certain cute way of flirting too with them there eyes. They make me feel so happy, they make me feel so blue. I’m falling on a real starling in a great big wave for you.

NIKKI-           Oh, I love that. Oh, I’ve lost my voice.

EMMA-         I hope you don’t mind me saying, but is it a bit ironic that you’re singing a song about looking into people’s eyes?

EBONY-        [Laughs] I know. Yeah, which I never get to do. And I’m on my iPhone zoomed in.

EMMA-         Oh, so you get the photo up and then zoom in and get a good look at the eyes?

EBONY-        Yeah. I say to people that I actually see better in pictures than I do in person.

NIKKI-           Oh okay.

EMMA-         Yeah.

EBONY-        It’s just a detail that obviously a seeing person would get.

NIKKI-           Ebony, having confidence, particularly now, is so important. And obviously you’ve just sung to us, you get up on stage and you perform. What are your tips for people who might not be as confident as you?

EBONY-        Take note of those people around you who really make stuff work for you; those are the people that are going to lift you up and take you on the highs, like the really big highs; from access to that workshop, that thing that you need to do, those are the people. I’m not going to lie, most of the stuff, the classes, the workshops I go to, I’ve known the teachers for many years, and I still go to their classes now. But that’s because they work, and they introduce me to people that they know who happen to have the same intuition about disability as a whole. And these are the people that give you that kick. And I’d say just believe in what you’re doing and don’t let anyone tell you any different.

NIKKI-           Yes, Ebony. Wherever you are in the world, however you’re listening, we hope you enjoyed that chat about disabled drag. I loved it.

EMMA-         I did too, I absolutely did. Ebony Rose Dark was lovely. We’ve got over 40 podcasts on our feed that you can listen to so far. We’ve got interviews with people like Ruth Madeley, who’s going to be in the next series of Doctor Who, you may know her from Years and Years or from Alan Met Barbara, plus more actors, authors, comedians, Paralympians and people with just great stories. So, do take a cheeky rummage through our archive until you find something that tickles your fancy.

NIKKI-           That tickles your pickle. Until next week, it’s Nikki and Emma logging off. Goodbye.

EMMA-         Goodbye.

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