Accessible language: Rebecca Hardy talks to Swarthmore lecturer Esther Loukin

‘Sometimes the call of God is not something that you have simple feelings about.’

How did you feel when you were first asked to do the Swarthmore Lecture? Did you know immediately what you wanted to say? Or was it more a slow process of evolution?

It took a while and definitely evolved. My initial response and feeling was ‘Absolutely no’. I thought: ‘I don’t think I can do a good job of that’ and I’m not really a writer. So I felt really unsure, but I really believe in our discernment process and I’ve seen it do amazing things. The committee was quite clear too about some of the things that they wanted me to cover. So, gradually, I thought that what they’re asking for is something that I have something to say about, and I couldn’t think of a list of people they could go to instead. So I sat with it, weighed it over, and thought, actually, sometimes the call of God is not something that you have simple feelings about, and I decided that it was probably right that I did it, so I gave it my best shot.

Tell us a little about your activism. You’re the co-founder of Reasonable Access, a small organisation led by disabled people that empowers other disabled people in the UK to enforce their right to access through peer assistance and information provision. What was the thinking behind that?

It came from some work that I initially started doing very informally, and it grew to a point where it needed more of an official container. It’s still a very small organisation, but much bigger than it was, and basically there are lots of reasons why people don’t use the law much, but the fact is that the Equality Act [2010] can’t work without some people taking cases, and that has been said again and again by parliament and people in this area. So, because hiring lawyers is very expensive, and because these cases are worth financial peanuts, the only people who take them on are activists. You have to feel very strongly. (I’m specifically talking about service cases here: like shops, or the NHS, places where the public go.)

We tend to take the cases in particular areas that are problems for us again and again, so we gain experience and expertise in that area. Through Reasonable Access, we support each other. None of us are lawyers and we can’t give legal advice, although sometimes some of us pay for legal advice, but we proof each other’s letters, turn up for each other in court, and watch each other’s cases.

We also try to raise all disabled people’s knowledge about the law generally, so that they can challenge in other ways too. That is really important as it helps us to resolve things early and pick what is most suitable for enforcement. We’re hoping to run some training sessions on Zoom, too.

You spoke about Reasonable Access’s ‘Disability Access Bingo’ in the Swarthmore Lecture, which combines common poor reactions to disabled people’s access requests, with strategies to challenge them. Could you tell us more?

There are generally very few responses and we tend to see the same ones again and again, so I wanted to pull out the patterns, so that we can learn to spot them and work with them. The ones I most often get are ‘you weren’t polite enough’ or ‘I didn’t know I needed to follow the Equality Act’. Another is: ‘Don’t you know about the cost of living crisis?’ Then sometimes you get really ‘off the wall’ ones. I once had someone who wrote back talking about Jesus, quoting the Bible, and saying I should forgive him for the steps into the BP petrol station. Seeing the same patterns in other people’s complaints has really helped me not to take them personally, but see them as part of a system. This makes me feel more kindly towards why that person might be being very defensive. Big businesses tend to behave differently than smaller ones. Some just lie, which I find particularly upsetting and difficult. Those are the ones I really want other people’s thoughts on: ‘Hang on, have I misremembered this?’, and often I haven’t, and I have [recorded it] on video. I’ve been accused of being rude, which usually I haven’t, but even if I had, it wouldn’t make it okay. Other patterns are saying that ‘other disabled people could manage it’, or ‘you should have taken a care worker’ or ‘your own ramp’. These are all ways of saying ‘you’re the problem’. Sometimes people ask you to educate their organisation for free, and ask you to come in and do some training for their staff!

I think the most common response is some version of ‘well, we treat everyone like that’ and ‘we need to treat everyone the same’. That’s not so much for ramps, but for other types of access. For people who need something in a different format, for example, organisations and businesses will say, ‘we give everyone this font’, but the point of ‘reasonable adjustment’ is that, in order to achieve equality, doing the same thing for everyone is not okay.

So through Reasonable Access and personally, you’ve promoted equality for disabled people by taking a series of cases – mostly as a litigant in person – about common failures to make reasonable adjustments. Which one or two are you most proud of?

I’ve just spoken with Young Friends about [the legal case I made against the coach company] National Express. There are a few reasons why I’m particularly chuffed with this result. This case went on over the pandemic and there were points during that time when it was desperately hard for me. As a defendant, National Express was pretty delightful. What happened to me was horrendous, particularly one really scary incident where I wasn’t strapped into the coach properly. But once it worked its way through the system and got to the right people, the organisation wanted to do the right thing. The company has now installed wheelchair spaces on up to around seventy-five per cent of its coaches, and that will be 100 per cent by mid-2024. The people there really wanted to achieve change. They were really open with me about what had happened, and what their challenges were, which is really important for me. Lots of young people use National Express as coaches tend to be something that young people use more. National coaches are also big providers of home-to-school transport and replacement buses, for example, and the overall transport infrastructure. It’s how people see their families, and get to work, so it’s really important that disabled people can use all the transport all the time.

Defendants like that make me want to be generous with my time. We want to agree to things that are going to be done in order to put right what happened, and I can feel warm to them. That kind of truth is really important to me.

Any others that leap out at you?

Another case that I’m proud of in a different way is about a shop that I wanted to get into, which, instead of a ramp, had a relatively small step. The guy said ‘some wheelchair users can get in’, and ‘I give them a bit of a push’. He wanted to go behind me, and push me into the shop, and I was really freaked out by that, and ended up backing myself against a wall. That is quite a common experience of people wanting to ‘help us’ in a way that is practically assault. There’s a blind woman, Amy Kavanagh, who runs a campaign highlighting this, with the hashtag ‘Just Ask Don’t Grab’. So I had to explain a lot about how my wheelchair worked to the judge, and why being manhandled into a shop by a shop owner I don’t know, touching my wheelchair, which feels like an extension of my body, is an invasion. Most people seem to think a wheelchair is a neutral object, but when they move it or touch it, I feel it; it’s part of me.

That was the first case I took where I felt that I did a really good job of explaining what the problem was, and why it had such an impact on me. It was other disabled people who helped me pull that apart, and explain to someone who wasn’t a wheelchair user, the actual feeling. The judge wrote this great judgement about whether or not the man could push me up the steps was beside the point, because there was a more important principle at stake.

Have you seen improvements for access for disabled people since you’ve been working in this area? Do you think access and inclusion has become more part of the wider conversation?

It’s more complicated than that. I think that, yes, there are, of course, things that are getting better. Like, when I went to sixth form, I travelled in the guard carriage on the train which was for the luggage with a door that manually shut, and I was really frequently left on the train with no ramp despite having booked it. There are no longer trains where there isn’t a wheelchair space. There are some things that are getting better, but, like I said about the platform lift at Friends House in the Swarthmore Lecture, I think those underneath things are very similar, and some of those are worse: particularly the sense that disabled people are asking for something unfair.

I think that one of the points of the idea that ‘access is love’ I am making is that the law requires me to make it very individual, attaching it to me – this sense that Esther is demanding this thing that is expensive, or awkward. But it’s not about me. It’s about something much wider than that. Every human being should be able to be part of what is happening in our community. It’s not for a small group of people. It’s for us all. In that sense, I feel like, because some people need to take these cases, someone needs to do it, and who else would do it, if not me?

So, yes, some things have improved, but other things have got more difficult. Life for disabled people is very hard right now; I am only able to do this because I am broadly doing okay, and I am very lucky in lots of ways.

Some of the struggles facing people now are financial, but obviously it depends on what sort of disability you have. But housing is also a big problem… if you are struggling to exist and your housing isn’t suitable.

There are very poor standards for accessible housing, and there are people who have enough money to buy a house, but the only place they could get wheelchair accessible housing is in social housing, so you either accept extremely compromised housing or, if you have the money, you have to build your own house. Not being able to get housing affects your ability to move or work, and takes up more of your energy. Being disabled is very expensive. The organisation Scope did some research which found that last year a household with disabled person needed an extra £975 per month. It’s now about £13,000 for this entire year – and that’s the average, so for half of those people it’s more, and that’s on top of disabled benefits which are supposed to cover the extra cost. So it is hard for people. It means that even if we are doing okay, we have a much lower standard of living than other people on a similar income.

Social care is a really big problem too, which is not purely financial. Even if you have an endless supply of money, you frequently can’t get the social care that you need. During the lecture, I talked about the criminal case against some staff at Whorlton Hall, involving people with learning disabilities and autism. I would really recommend Quakers to look at the work of the journalist George Julian. Her work started with kind of live-tweeting the inquests for people with autism and learning disabilities who died in state care. The hearings are usually private, so no one knows about them.

She’s been in court everyday about Whorlton Hall, and writes about the reports provided by the Care Quality Commission looking at the failing and successes of social care providers. She pulls out the really dry information from a report that no one will read and makes it more accessible, saying things like: ‘Imagine you live somewhere where you never have a choice of your own food and drink.’

What can Quakers do to uphold this?

If they want to send money to Reasonable Access, they are always welcome to. Now the pandemic has chilled, we have good ideas about what we want to do. Quakers can actively try to research this area, because one of the problems is that most people aren’t interested in it, so media outlets aren’t exactly putting it on the front page. You have to try a bit harder if you want to find information, but there are supportive people who are trying to chip away at it. Reasonable Access has a Twitter feed and we will sometimes put information up about court cases and members of the public can come along and watch. If you use social media, make sure that you’re following some disabled people who are talking about these kinds of access issues, and learn what you’re not seeing.

Another thing you can do is try to notice those moments where you might feel defensive and unsure, and lean into that and try to become a bit more curious about it. Try to think about access in as broad a way as possible. Disabled people are everywhere and whatever you’re doing, try to make sure that you’ve thought about how it would work for everyone, by already having a plan, and not panicking at the last minute. Are your documents available in different formats? Do you know if someone might need an interpreter? Is everything just audio or visual, or requiring people to go up steps? I think one of the most common things that is shared between disabled people is that a lot of us are quite exhausted, whether that is our medical conditions or just the fact that life is a lot. So making sure that things are easier for us is immensely helpful. Also not being worried to talk about it. Most disabled people will not take a legal case in our lifetimes. We’re not trying to complain and criticise. We just want to live our lives, and we want things to be better, but we can’t sort this out by ourselves, and it’s onerous to be expected to. So we need people to listen and help.

I’m interested in how your faith underpins your work. You said in your lecture that Meeting for Worship was a place of peace and reflection for you. I’m interested in how much Quaker discernment has played a part in your activism?

It’s very important for me personally, and informally, but I’ve not used Meeting for Clearness, and I don’t have a Quaker committee. But it’s important for me, for sure, in Meeting for Worship and speaking to other Quakers, and those kinds of daily spiritual practices which make me feel like I’m a Quaker all the time. One of these values is ‘not doing nothing’ and not allowing things that are wrong to go unchallenged. It’s not my responsibility to do everything, but doing nothing also doesn’t feel right.

It said on the Woodbrooke website that you first connected with Quakers through the Young Friends General Meeting (YFGM) and that you have a ‘deep affection for that community and its non-geographical nature’. I wondered if you could say more on that?

Worshipping online, I’ve found myself thinking about geography. Of course it’s very important, meeting in person, but I’ve always gone to my Local Meeting and that has varied according to where I live. Generally, I feel more connected to Quakers as a wider community. Young people tend to move around a lot, and are not so rooted to one Meeting. It’s not something I feel particularly strong about, but I also like the YFGM approach to membership, which says if you’re actively involved, you’re a member. Again, I’m not saying that’s what we should do, but just that that was really inviting to me, that I didn’t need to be unsure about whether I needed to go through some kind of process, or was I enough? If I wanted to be involved, I was welcomed. I was also involved in a really cool project at YFGM which was a really good example of access solidarity.

Can you tell us more about that?

My memory might be wrong, cos I’ve not looked up the minute, but somewhere between fifteen and twenty years ago, I had extra costs going to YFGM. There was a very clear bursary policy, but I felt unsure about what could be covered. For this particular YFGM residential, there was an assumption that people would be sleeping on the floor. I tried it, but it meant that I was very uncomfortable, and I didn’t have enough money to stay in a hotel. (I wasn’t totally broke, but I didn’t have much disposable income because I was young.) Anyway, I remembered talking to people and being unsure whether I should apply for bursary money, but other people went away and drafted a new policy. We ended up creating an access fund for YFGM which as far as I know is still running and still has the same criteria. It wasn’t means-tested. The message was ‘we want you to be fully involved in YFGM’. Lots of people have used it over time, and I think it says something clear about what YFGM believes in – that accessibility is a value. It’s something that they feel is important, and it’s not the same as the bursary fund.

We’ve talked a lot during this Yearly Meeting about revitalising the Quaker community and releasing energy: is there anything that you would like to see happen as part of this?

Well, I ended my lecture saying that I wanted to reduce burdens and release the joy, but I was talking about reducing the burden on disabled people and releasing the joy – not just for them but for all of us. I want this joy to be part of how we feel about doing things. It needs to be embedded throughout. I don’t want it to be something that people feel, ‘Oh we have to do this other thing and it’s very difficult’. We can all be kind to each other – and it’s good for us all. Because access issues will affect most people at some point in their lives.

Rebecca is the journalist at the Friend.

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Comments

This is very inspiring!
I do hope Esther is invited to write a new paragraph for <whatever replaces QF&P and A&Q>, to speak directly to the question of how we can best love, support and uphold disabled / differently-abled people in our Quaker communities.
Paragraph 29 of A&Q, which Esther spoke to powerfully in her lecture, uses the word ‘disability’ in an old-fashioned way. It was written at a time when, unfortunately, ‘disabled people’ were often not what first sprang to mind when one heard the word. Thankfully we have moved on! So the word does not make sense in that paragraph anymore. It would be better changed to ‘infirmity’, because the paragraph is about dealing with old age, as follows:

29.
Approach old age with courage and hope. As far as possible, make arrangements for your care in good time, so that an undue burden does not fall on others. Although old age may bring increasing infirmity and loneliness, it can also bring serenity, detachment and wisdom. Pray that in your final years you may be enabled to find new ways of receiving and reflecting God’s love.

With a new paragraph written by Esther in situ before it, and with the change to ‘infirmity’ within it, this would bring things up-to-date; both clarity and advice would be restored.

By markrdibben@gmail.com on 27th July 2023 - 10:00

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