Busting Myths and Advocating for Assistive Technology

You'll be fascinated by our guest, Katherine Perry, the CEO of BATA UK, as she sheds light on the critical role of Assistive Technology (AT) in international development and health fields. We tackle misconceptions that AT is a 'scam' and delve into how we can better advocate for AT as a community. Throughout our enlightening discussion, we also grapple with the ongoing effects of the Covid-19 pandemic on Bata and its response to recent policy changes. 

This episode is a powerful exploration of the need to include people with lived experiences in the dialogue surrounding assistive technology. Together with Katherine, we confront the difficulties of gathering the right information about AT and the challenges that arise in reaching out to communities outside our own. Hear firsthand experiences, insights from experts in the field, and understand the importance of providing tangible solutions to the issues at hand. 

Finally, we turn our lens to the media's portrayal of assistive technology and the dangers of promoting a one-size-fits-all narrative. Katherine helps us understand the critical importance of recognizing the lived experiences of people with intellectual disabilities. We probe into the potential of techno-solutionism and the importance of ensuring that solutions are accessible for those who need them. Join us for this stimulating conversation as we investigate the challenges and stigmas associated with AT and the responsibility employers have in supporting people with disabilities.

Chapters

• 0:00 The Importance of Assistive Technology
• 7:35 Improving Assistive Technology Through Collaboration
• 14:05 Media Engagement and Representing the Disabled
• 22:35 Challenges and Stigma in Assistive Technology

Transcript

0:00

AXSCHAT Katherine Perry

NEIL: 0:01

Hello and welcome to Axschat. I'm delighted that we are joined today by Katherine Perry, who is the CEO of BATA. BATA is the British Assistive Technology Association. I'm proud that my organisation is a member. We have been engaged with BATA for a long time and the organisation I used to work for before I even joined my current one, was a member too. And in those days, we had the nickname of Men in Sheds, because assistive technology tended to be made by enthusiastic people that liked to tinker with technology. I think that, you know, as time has moved on, assistive tech and accessibility has also moved on, so we've got bigger sheds now and I think we are probably moving into garages maybe. Anyway, Katherine has taken on the leadership, BATA have ratified a new mission and vision. But welcome Katherine. Maybe you could tell us a little more about BATA and also your history because it's not this role that you've been engaged with assistive tech and accessibility but you've done quite a lot of previous work, working in politics and so on and so forth?

KATHERINE: 1:15

Yes, so, BATA has been in existence for about 13 years or so. And it's kind of ebbed and flowed during that sometime and I think, you know as an organisation, run by members, we struggled during COVID quite a bit, to flex, considering all of our members own needs to flex. So, there has been a more dormant period and coming out of the other side, I think the needs of our members and probably also of disabled people too, have changed somewhat. So, BATA's response to that has been to appoint me and also to consider a little bit differently the work we do. So, we are a sector body and a membership organisation. We have over 90 members from across the UK. And internationally as well. Our goal really is to unite voices for progress in assistive technology. So, a lot of our members re commercial organisations, universities, schools, publishers and charities as well. So, there is a whole cohort of us all pushing to try to make progress verses technology. In particular, our work falls across sort of five areas of activity really. Advocacy, challenging stigma and developing our community partnerships and research. And the last one, I believe is I can't remember, advocacy, challenging stigma, strengthening, developing community and research. So, in developing those areas of work, all of those things were important to us. They are critical in terms of every project that we take on. All of our special interests' groups, of which there are seven and our goals I think over the next period are really trying to really assess the impact of COVID and some of the more recent policy changes happening in the UK and the needs of our members and what that looks like now. So, it's a busy period upcoming for us. But I think we are all committed to making significant changes. And then for me, myself, I've been involved with BATA and not just in this capacity, since about October, November, last year. I'm also a consultant on the side so I do mostly efficacy with engagement work with different kinds of clients, underrepresented groups and disabled people. But before that, I worked at the global level as well. So, with partners like WHO and UNICEF and prior to that I worked at the European level, for European disability forum. Particularly around the institutionalisation and assistive technology and prior to that, back in the UK, when I was living in the UK, I set up the All-Party Parliamentary Group, originally before it went off to Robert McClaren. So, a long history working in international development. Thank you. International development, RG and health. So, it's all a mix.

DEBRA: 4:32

Katherine, you have a very impressive background and that's something that I love about our community is that often you do see leaders like you just determined to make a difference, whatever it's going to take. So, I really appreciate and applaud that. I also, as you were talking about BATA, I was thinking what do we have in the US that's complimentary to it because of course, assistive technology is so important and I was just doing a thing a little thing in my head and I thought, well, I know we have ATIA, but that's, it's an association, but I always thought it was more about a conference but maybe I know we have our season, when we talk about AT, but I don't think it's that. I know that in each of our states, we have AT groups where our government and our States will pay for you to get AT and each State, some of the states are stronger than others. But I don't know if we have an association like that. So, that's my first question. But also, another thing, in line with that same question because some people think that assistive technology is old fashioned and needs to go away. We used to have somebody on our community at Axschat that also said that AT was a scam and were trying to take advantage of the poor people with disabilities, when all you needed to do had an accessible website and you had everything you needed. We sort of try to cut trying to explain well, we actually have to get on the computer to get to your accessible website but this person just didn't understand. And so, it feels to me, especially as we are finally really trying to get our hands around the aging issues that are coming up and overlapping with a lot of the disability issues, that AT is more important than ever before. So, I am curious how many Katherines and BATAs around the world that are helping you all and what do we do as a community to really, really try to get to the AT community because it just feels like there are some major gaps that are preventing you all from doing what you need to do.

KATHERINE: 6:40

Yes, so we do work with partners in the US. We don't have any current sort of specific partnerships but that's mostly because time has moved on, over the last couple of years and I think we are in a new place trying to consider what partnerships suit us and also, what our priorities are. I think that is the other thing. The priorities that we have five years ago have shifted somewhat, you know, I think, talks of climate, also being an issue as we move forward. So, we do, so we are in conversations and many of our members attend ATIA. I'm actually a judge on the panel for the AT scholar programme too. So, I do see there is a lot that we can both learn from the US but also share from our own experiences. And, it was interesting whilst you were telling you know, AT is a scam or novelty, what are some of these more stigmatised views probably. My simple answer to those kinds of things is you know, sure go and speak to disabled people. And see what their views are about assistive technology because whether I open my front door and I ask the first person that comes down the street, whether AT is a scam or impactful. You know, is that really the opinion that needs to inform the work that we do and I'd argue not really. We need to make sure that it's disabled people. And also, I think the representatives of the industry alongside our allied health professionals, some of them coming through a patient pathway, whether it's through supported employment. You know, their voices count too because at the end of the day they are the ones who are implementing this and they see the results and often have to report on it. So, I think we have obviously faced a lot of barriers in that regard and I don't think those kinds of conversations are going to go away overnight. I think, as we know through history, it's going to take a long time. But I do see partnerships as a way forward and also breaking out of some of our silos, we do love those. In the AT field and as you know, I'm sure you have been in this industry for a long time, we are big fans of having the same conversations with ourselves. And although I think they are important updates that happen in those conversations over the years, I question whether really speaking to people who you are already know mostly converted to our way of thinking are really the right people to be speaking to. And I think there are a lot of other industries that need to hear the stories that we are telling outside of our community. So, I'm not sure if I answered particularly your questions? But those are the things that came to mind.

DEBRA: 9:39

You did a great job. And you brought up some really, really important points. First of all, I just want to say and this is, I've been in the field a long time, I have. And I am having some conversations and I had, for example, had an opinion of braille and I heard from a lot of experts and most of the experts I had heard from about the braille, they weren't blind, just realised it now, as I'm thinking back. And so, I was talking the other day to a real expert on braille, Steven Tyler, who is with Leonard Chesire now. I am a huge fan of him. And I was talking to him and I said, you know, I hard braille is old fashioned and he just, he just informed me so well. He just informed me for a long time how whoever was saying that and then I brought it up to Dr Kirk Adams yesterday, who is the former AFB, American Foundation for the Blind President, CEO and he is also blind and so, I brought it up to him and he just went off on me too and he's like, and it's exactly what you said, Katherine. Everybody's got an opinion, walk up to your front door and tell you whatever they want but they don't have lived experiences with it. So, we are still talking to the wrong people. That said, I also want to say because I know Antonio wants to ask a question or make a comment. I also want to say to you Katherine, how can I help you in the United States. And I would hope our community would want to do the same thing. So, please let me help facilitate conversations in the States for you. I know we would at Billion Strong, my nonprofit we want to work with you, but I think one thing that should all do, we should all go to Katherine Perry and say, how do we help, how do we help? Because why does AT not have something like IAPP? I mean why are you all not more of, sometimes if feels like you are the stepchildren of our industry. Maybe that's just me thinking that. But I'm now going to be quiet and let you answer that and I will turn it over to Antonio.

KATEHRINE: 11:40

Should I answer the question or hand over to Antonio?

DEBRA: 11:42

Yes.

KATHERINE: 11:44

So, I think, first of all, thinking about what you said is that I think it's really probably a psychological phenomenon that applies to every area of life but I think when we all believe the same thing, broadly speaking we have the inherent assumption that our colleagues think the same thing that we do. But also know what we do. And that's not always the case and I have fallen into this case myself, and even this work, where I work with the majority of commercial organisations and many, many times with people who have you been you know trying desperately to get AT into the hands of children and adults that need it. I'm not familiar with some of the language or some of the things that happened at the international level that are actually really impacted by words, so there is a definitely a need to perhaps keep talking about but we need focus on specific areas of learning. And then, in terms of you know how you can help, I think, with most things, it is hard to know what you don't know. And so, for me, it is I think, I could speak on behalf of most people on the Council at BATAm it's being open to connecting and talking. I am a great believer in sitting down and getting to know you, like, who do you know and what do I know and who do we have in common and who not? But also making sure we have got a plan. Sometimes I leave these conversations and they are like great to have when I learned a bit. But there is nothing really tangible that we can work towards and I am someone that is quite focused on solutions. I want to know what the answer is to this equation. And so, in whatever conversations I have with partners it's always with that goal, what is the thing that we need to do to make is this better. And so, I would say more conversations, more connections, and I think being open to kind of longer-term partnerships is probably what would really help. Yes. Thank you.

ANTONIO: 13:54

So, and you were previously tracking about silos and talking within the same groups and over the last over the last couple of months, we have seen an increase in the number of articles touching, not just assistive tech, but also software and other technology that impacts people with disabilities in different mediums, from Wired Magazine, Harvard business review, tech grants. So, it's somehow becoming, some of these entities are becoming more comfortable talking about the subject. You know, even, one of the MIT magazines even dedicated a magazine, just to assistive tech. How do you see the importance of these articles being published and going mainstream but at the same time, there was a conference a not very long ago, in Brussels on the topic of accessibility and very important, but there were no journalists. If the topic was about let's say data privacy, if the topic was about cyber security, probably you would have a room full of journalists. In this case, I don't think even journalists were invited. So, there is an interest from the media, but sometimes you know, we don't seem to recognise or don't seem to connect to them. So, why you believe that these things are happening?

KATHERINE: 15:30

So, to start off with your first question which is around what I think increased engagement by the media and this topic of interest. So, I think that that's great and the more mainstream conversations that we can have around technology is great but it's not the only thing and these conversations that media are having need to also be about the lived experience of disabled people and the story of that and, you know also, I think it's hard to deny the fact that we sometimes talk about disability, as if it's one group of people that all have the same challenges that all have and the truth is that even within disability, there are groups that experience unbelievable challenges, compared to an open person is a leap of joy but it's also difficult. But, it's really important to remember that you know, not every disabled person can speak for another disabled person. And so, when we are writing about AT and how that comes across, how that comes across, thank you, in the media. It's the thing I ask myself is who is being forgotten in this conversation because undoubtedly it's a person with an intellectual disability or the people that like the intersectionality living with compounded discrimination and stigma. And that's something that we have to be particularly conscious about that. You know, I'm aware of that in my work at BATA and in my previous roles, the majority of the work was in Africa and Asia and South America. It's important to consider, I think all of the angles, without prejudice. So, I would love to see that conversation continue and obviously, you know I think it takes time to integrate narratives. We also need to be more aware of this happening as well and insert ourselves into that narrative a bit better. I would say to make sure that that narrative is not being written by somebody else. It is actually representing the values that you want to see. But inherently, I think it's great, the only other thing to say I think about that, I think and sorry if this is a long-winded answer. But a lot of what gets attention in the fancy technology is that you know cutting edge and that's great, that's great, talk about that an important part of the innovation journey and encouraging interest in what comes next. But the reality is that for most disabled people they are not waking up in the morning saying, where is my newest robot, that's not the reality. The reality is they want to pay a bill. They want to go to the toilet. They want to be able to call their mum, or their sister or their cousin and it's not to say that you know, those other things aren't great to talk about, but it's, we are solving problems on the one end of the scale, but again the reality of the lived experience is that there are solutions that already exist that are not currently in the hands that need them and there are reasons for that. But that's really the injustice of this and that is the thing that I think we need to be talking about now. So, there are a lot of, I could probably talk about this for a while but there are a few things that came to the top of my head. Yes. I think that probably answers it.

NEIL: 19:07

So, I think I've got a couple comments on some of that. I think that I am picking up on your point about the diversity of different disabilities. Certainly, when we are having conversations about assistive technologies and integration of assistive technologies, they have tended to focus on resolving challenges for a particular subset of disabilities. You know, so you're just talking about who is left behind where people with learning differences and neurodivergent people, aside from the solutions around literacy and dyslexia, there is very, very little in the way of assistive tech for other cognitive conditions. So, I think that you know, there is still quite an imbalance in terms of that. But also, I really do take your point about techno solutionism that goes on in the press. You know, if you have got a hammer, you know, every problem is going to look like a nail. You're going to want to hit with the hammer and a lot of the time, you're right, there are solutions out there. There is a lack of, I think awareness of the some of these solutions and I think we have had Ester Deacon Paul on, a while back, who was working on all of the sort of the assistive technology lists, making sure people were aware of all of these different technologies that were already available because one of the conversations that has been circular in BATA has been the reinventing the wheel of the assistive technology. We see someone announcing that they've just invented something that's been invented by four other people or they're solving a problem on behalf of people because she hasn't actually consulted with the user population. They have made assumptions. So, how do we engage these dispirit populations at the time, sorry this is such a long-winded question. It started with a comments but we are now going into a question. How do we engage our dispirit communities around assistive tech, so that they can co create when we are in a period where we have changing interfaces in the computing paradigm and how we interact with technology is changing, because the assistive technology we've currently had and we've had for years and years and years, have worked on sort of traditional computing platforms. Even if mobile is different and has more censors and everything else. It's still, you know a computer not that dissimilar from the desktop computer. So, people are running stuff in a similar way. But as we get into things like special computing and embedded technology inside the fabric of buildings and the environment, there is going to bring about a whole different kind of set of opportunities and also challenges. So, how do you see us addressing that as a community and as a professional group?

KATHERINE: 22:35

I think part of it is leadership, being aware of some of these issues and making it part of our considerations. I think you have to be deliberate and ask the question of how best to engage and I don't know what the answer is. I think for everyone that that is my goal, is always to consider perhaps who isn't part of the conversation and how we better engage a person, or group of people. I think, as I said earlier, also assuming that we don't know everything and sometimes, I think we can get stuck in assuming that we are well connected and we often are but to the networks that exist to us. There are lots of other networks that exist that can provide us a different perspective. I would use an example you know, from a few years ago. I was writing a paper and I sat down to review that paper with the director of the organisation at the time. And she said to me, Katherine, AT is very important but it's not the most important thing to people to disabled people. Legal capacity is something that we struggle with daily. And I was quite young but I left that conversation with a completely renewed perspective on what it means to be part of the disability community. Which is that our experiences are so broad that we really have to make an effort to educate ourselves to the reality of a lot of disabled people and I think with that comes a renewed effort to engage. I often think we can make it more complicated than simply reaching out. I've had a lot of very productive conversations from just making a deliberate attempt with just trying to engage. It's not always successful but being conscious and making the effort is important.

NEIL: 24:36

Antonio. Thank you. Antonio, I know you had a question.

ANTONIO: 24:43

Following that, you know today, we have topics that can you know, like Chat AI all these topics are becoming mainstream. Do you think that sometimes this tends to send the attention to these technologies and some investment that should be addressing basic problems that we have in assistive tech and that being driving into this new technology that are coming, do you see the money that was needed in one place to solve basic things are now going to the mainstream technology because it's fashionable and it's friendly?

KATEHRINE: 25:25

I mean first of all a caveat, I am not an expert at all in AI, but I think the march of progress is inevitable and it's our job as a movement to make sure that we are present in our voice, in that conversation. I think that we need to create alliances and certainly, organisations like BATA need to be forging impactful alliances with disabled people's organisations that are campaigning particularly around some of these issues, around the fairness of AI and the dangers of AI but also the opportunities of AI for disabled people. I don't know if it's an either or because I think we cannot avoid, the march is going to continue on. Though I would say that it's probably another area of campaigning for us. I don't know that it's something I'm particularly angry about or feel passionate to stop or I want money to move in different direction rather, whatever happens in the future and needs to always go through certain check points and one of those has got to be disabled people's experiences.

DEBRA: 26:49

That's just a good way to look at it, Katherine and the question that I have, I believe is going to be the same answer. But as you have been giving us today which is building awareness. Continuing to build awareness. But another thing that I've seen often that happens with assistive technology is that people assume that mainstream technology is already solved it so, it's like, oh, you don't need captions because you have voiceover. Oh, you don't need that, you don't sign language because we have now cloned them or whatever it is. And so, is that do you find is a continued issue and that people assume you don't need assistive technology because it's already been blended into the main technology. So, it's just make sure you turn the accessibility features on and you have got it? I still hear a lot of that still, I was and just wondering if you are hearing that as well?

KATHERINE: 27:44

I mean, I think that's true. I think that's very true. I think I also hear other things. You know, some people aren't aware that they even have a disability. A lot of people don't even know what assistive technology is. If they do, they are not sure how to access it. If you're a parent or a career, you know, it's the endless chasing down of information and I think, I think broadly underneath your question is do a lot of people think this is already solved and I think some people might think that it's already solved.

DEBRA: 28:24

Yes.

KATHERINE: 28:25

And if we take dyslexia as an example, you know, you have got a spell check.

DEBRA: 28:30

Right.

KATHERINE: 28:31

So, is that all you need? I'm a person with dyslexia. And dyscalculia as well. I just stay away from numbers as best I can because I've no idea how to make it better.

DEBRA: 28:44

Yes.

KATEHRINE: 28:45

And that's someone who is in the field and you know, it's took me a long, long, long, long time to even understand how I learned to talk. I was just doing what everybody else did and wondering why I wasn't getting better results or why I was feeling so stressed all the time or yes, why I wasn't part of the collective, I suppose or why I couldn't relate and to be honest, it wasn't about, I've got the solution now, I've got the spell check. But I didn't even, I was so far away from that conversation. I think the big thing comes down to employment actually and do employers think it's already solved and if someone does disclose do they really know what to do with it. I know that's less of a conversation in larger companies, or you might have a HR team available to help you with some of these things. But small and medium sized businesses and people that never touch base with any of these things before, it can be incredibly challenging and a lot of times yes, that's just me and I could just get you a spell check that you like or something to that degree but I don't have any research or anything I can point to specifically, just obviously what I hear from our members. But I would say that you know, there probably is some stigma remaining this is a problem solved. Yes.

DEBRA: 30:13

Well, Katherine I love how you express that because I really, really like how you explained that because I also struggled with dyslexia and math my whole life and I also wondered why everybody else was just smarter than me. Why can't I stop talking all the time? It was funny, I didn't and nobody even told me, took me anywhere near of a diagnosis until I was in my 50's and then I was like oh, and then Neil was like wow Debra, I don't know how you couldn't have known that, I knew that the second I met you. And it's just funny how, I guess this is all about the world is shifting and changing, so I just wanted to thank you for being so authentic and sharing that with us that was very powerful and I'll turn it over to Neil.

NEIL: 31:08

Thank you. It struck a chord with me because about 13 or 14 years ago, I was working for Insist at the time and we were looking at dyscalculia, and having been an organisation that specialises in dyslexia, the numbers of the population are very similar in terms of impacted people and there is quite a significant overlap. But there is pretty much nothing and then when you're talking about disclosure. Actually, if we think that there is stigma for you know what is concerned to be illiteracy, it's even worse around the lack of numeracy. So, disclosure and I can tell you, working for a large organisation, disclosure is still an issue in large organisations in as much as it is small. You know, it's something that we are constant looking at, how we can create that psychologically safe space for people so that they can feel comfortable, disclosing and I even got into a conversation yesterday on social media where there was someone saying I would advise, vast you know, their handle on social media is the ADHD Academic and they were saying, I would advise people, if they were my friend in 95% of the situations, not to disclose because of the hidden prejudices that people experience, even you know, what are considered to be, you know, relatively supportive environments. And I found that very sad but at the same time, you know you do still experience these perceptions of you know, oh, well you know that's just, are you just making it up or are you being lazy or trying to get an advantage or come on. You know people get frustrated with you and you know, ADHD, in particular there is also significant push back against it being a disability and so, that also, I think, makes people unwilling to disclose and maybe makes it challenge also to find technology that might help, apart from obviously tasks and lists, which people have suggested a few times over the years. So, thank you really for highlighting, you know the issues and the disparities because you know spell checkers don't solve to everyone. Neither do task lists or timers and so on. You now, the mainstream technology has a role and mainstreaming of assistive tech and embedding can help remove some of the stigma or help people as an introduction to the benefits of assistive tech. But it's like the pathway drug onto the really good stuff of the specialist assistive tech. So, thank you, very much for coming on and sharing with us. I need to yes, just highlight the fact that Antonio reminded me about the BCG survey, which is the Boston Consulting Group. They had a survey recently which said that most organisations think they have got between 4 and 7% of their employee base, as people with disabilities and you know, they were self-reporting 25%. So, there is a massive disparity. So, thank you, very much for coming on. You know the opportunity is there for us to do more for everyone and to change the world. Thanks for being part of it. And thank you for Amazon for sponsoring us and thank you to My Cleartext for helping keep us captioned. We look forward to continuing discussion on social media. Thank you, Katherine.

KATHERINE: 35:08

Thank you.