In this conversation Patricia talks with me about her experiences a blind person, her work to advocate for people with disabilities being valued for their expertise when asked share their knowledge with others and the importance of having people with disabilities at the decision-making table. Patricia also talks to us about accessibility and the role of guide dogs in giving blind people more independence.

Resources from this episode

Book: Adopting a UDL attitude within academia: understanding and practicing inclusion across higher education.

AHEAD

Gaston’s twitter account

Transcript of this episode

SUMMARY KEYWORDS

universal design, inclusion, bleeps, guide dog, barriers, awareness,

SPEAKERS

Mags, Patricia McCarthy

Mags  00:00

Welcome to talking about all things inclusion, a podcast where I get to meet and learn from people in the field of inclusion – in its broadest sense – that inspire me. I hope they’ll inspire you to. Today I am talking with Dr. Patricia McCarthy and Gaston. Patricia is passionate about all aspects of disability and education. In addition to her research and teaching, Patricia has a great deal of experience working with nonprofit and grassroots organisations, undergraduate and postgraduate students with and without disabilities, and also professional academics and policymakers. She has particular interest in research in the education experiences, and transitions, choices and opportunities of blind and visually impaired people. Gaston is a great guide dog that likes playing swimming, and going for walks; when they’re not working and looking after their Twitter account. Patricia, I’ve had the opportunity to work with you on a number of committees now. And your openness has enabled me to further my own understanding of accessibility, and more importantly, inclusion for blind people. I love our chats and recently walks with Gaston. So I really wanted to share some of those chats we’ve had here on my podcast. That’s why I’m delighted to have you and guest on here today to talk about universal design, the work of Gaston and how these reduce barriers to inclusion for blind people.

Patricia McCarthy  01:30

Hi Margaret, thanks very much for the invitation today. I will definitely talk to you, Gaston  is currently sleeping.

Mags  01:41

Do you know that I’ve noticed that a lot. When we’re out Gaston on takes his naps while you’re working. So he’s available then to make things more accessible for you when you’re out and about. Patricia, can we start off….Can you start off by telling us a little bit about yourself, your background and your journey to becoming an advocate for universal design and inclusion?

Patricia McCarthy  02:05

Absolutely, I suppose to begin with, as Margaret said, there, I am registered blind. And I also have a physical disability, which has, it’s part of my life. But it’s not the only part of me. But it has impacted significantly, I suppose on everything, every aspect of my life in that I suppose to begin with because of my visual impairment, I had to come to school in Dublin, and I’m from Cork. So back in the 1970s, there wasn’t many options around education for blind and visually impaired people. So I came to Dublin to a special school for blind girls. And I was amongst the first cohort back in the 1980s to sit state examinations. And I suppose that experience was very institutionalised and segregated. But then in the 1990s, the late 1990s, I got the opportunity to go to university and do a degree. I did Sociology and Social Policy, and went on to do a master’s in sociology, and that was in UCD. And then I was very fortunate to get the opportunity to do a PhD with  my supervisor, Professor Michael Shevlin, in Trinity College, Dublin. And as many people will know, Michael is very passionate about inclusion and special education, and has a great understanding of disability issues. So I suppose I was very fortunate to have him as a supervisor. And I suppose it was really during that time of doing my PhD and my PhD looked at the education opportunities and transition, or yes, the education opportunities and transition choices for blind and visually impaired people. And so it’s when I was doing that research, you know, while much has changed in that area for blind and visually impaired people, I recognised that there were still many barriers, particularly when it came to employment opportunities and higher education going on that transition from post primary education to either further and higher education and employment. And I suppose that’s when I really began to think about, you know, what I could do to contribute and, you know, to raise awareness around this area. I was very fortunate. My mother was a real advocate for me when I was a child, and it was thanks to her and other parents that I and others got the opportunity to sit state examinations. So I suppose, in a way, I had seen as an adult, I look back, and I could see what my mother had done for me as an advocate. And because I am in the position where I have achieved at a very high level academically, I, I suppose I’m in a fortunate position where I have opportunities to advocate for blind and visually impaired people and other people from marginalised backgrounds.

Mags  05:46

Oh, so that has been a journey for you, Patricia, can I ask? Was it a? Was it a difficulty for blind people to sit state exams? Was it because you’re blind, you can’t sit them.

Patricia McCarthy  05:58

Ahm well, in the special school that I attended, it was,  there wasn’t a secondary post primary curriculum, at all for in that special school at the time, so we were amongst the first cohort to actually have a recognised post primary curriculum to follow, and therefore have the opportunity to sit state examinations.

Mags  06:25

So you and your peers who who sat the Leaving Cert at that stage, where possibly then the first blind students at post secondary education,

Patricia McCarthy  06:36

We weren’t, while we’re going amongst the first, there would have been some in Rossmini where the boys went at the time that would have sat state examinations. But it wasn’t it wasn’t the norm. Let’s put it that way. Because the expectations for us were so low, we weren’t expected, you know, we were, I suppose the very common ahm employment opportunities were telephony, which is answering telephones. And, you know, we were strongly told that we didn’t need particular subjects. And we didn’t need to, like, there was often you know, many of even those who sat exams with me, you know, some didn’t do Iris, some didn’t do math. Because we were told we don’t, you wouldn’t need those, you only need those if you’re going to college, and there wasn’t ever an expectation that we would go on to university.

Mags  07:35

So it was it really was like your physical disability was aligned with your cognitive ability?

Patricia McCarthy  07:45

Absolutely, absolutely. And I suppose because we didn’t have, you know, we didn’t see others going on to university that were blind and visually impaired and things like that. We had very low expectations, even for ourselves. Because we were constantly it was this reinforced thing that you’re not able, you’re not capable. So therefore, you know, you internalise that, particularly when you’re a teenager and things like that. People, you know, the teachers and the adults that are telling you this, that they know best?

Mags  08:25

Absolutely. So you’ve actually been breaking down barriers from quite a young age. And myself, as I said earlier, myself and Patricia have known each other for years, and I’m learning this part of Patricia’s life fresh today as well. So I have loads of questions, I can actually see how you moved into wanting to know about Universal Design and Universal Design for Learning, because you’ve had to break down barriers to gain access, whereas UD and UDL is about removing barriers to access. Can we talk a little bit around those that barrier accessibility?

Patricia McCarthy  09:03

You know, I suppose, UD and UDL, you know, as you said, put a system in place whereby those, we’re not constantly having to break down the barriers ourselves. Because for most of my life, I feel I am challenging the system, trying to break down barriers. And that’s exhausting. So, you know, when I started learning about universal design and universal design for learning, and I suppose I’ve been hearing about it for a number of years, but it was in the last decade, I definitely would have taken a lot more interest in it. And, you know, I, I, it was great to realise that actually, you know, people were trying to put in place systems whereby there was or there can be multiple ways to access something in the curriculum, you know, that everything doesn’t have to happen ahm through a visual means, for example, or, you know, or even that, when you’re, as a disabled person, when you’re answering exams or doing assignments and things like that, that there are other there are more than one way to, to do something. Because up to relatively recently, if you couldn’t do it the standard, or normal in quotation marks way, then there was something wrong with you, and you needed to change to fit into the restricted system. So it’s, it’s great to see a growth in the area of universal design and Universal Design for Learning, both internationally. And here in Ireland, we have many people working in the field, including yourself. And, you know, we have colleagues in Trinity College, including Mary Quirke who’s doing incredible work in this area as well, you know, both within education and for marriage within career guidance, as well. So it’s great to see that actually, and I suppose, the great thing about universal design and Universal Design for Learning is that we need to actually think that it can be applied everywhere within society, not just purely within a classroom, for example. And, you know, it’s, it really is seeing how we can understand and practice inclusion, as well. Because, really, if we’re only giving certain certain ways of doing something that isn’t inclusion, because you’re expecting people to be able to fit into very restricted areas. And again, it’s, you know, it’s this, how am I going to do it, and the responsibility often nearly comes back down to the individual, to see how they’re going to get over this next barrier or break through it again. And I suppose often, and many disabled people will probably say this, we often feel were forced to do so many things. Because, you know, I don’t know how many times I’ve heard, you know, we’ve never had somebody with a vision impairment or significant vision impairment before, so we don’t know what to do. And I suppose really, those that practice, universal design and Universal Design for Learning, even if it’s their first time to encounter somebody with visual impairment, they are more likely to have an acceptance and an appreciation that actually, I need to learn how to ensure that this person is included, and that they feel they belong within the system. And I think their sense of belonging is really important, because often, when we , you know, when I come up against these constant barriers, you know, I often feel really do I belong here at all, because every obstacle seems to be put in certain people’s way. And like, you know, there’s lots of people working in this field, making huge differences. A colleague of mine, Vivian Rath, and others are doing fantastic work around, you know, in raising awareness around the importance of having disabled people at decision making, in decision making positions, and at the decision making table, and I suppose the great thing about that is, you know, we’re trying to ensure that actually, it’s disabled people are ahm, sorry, disabled people are pushing this agenda, but we need those in position of the power to actually enable us to, to do this and to raise the recognition that actually, disabled people need to be in these decision making positions, because otherwise, nothing is actually going to change for many disabled people. Because it’s ah well, we’re a very small cohort of the population and it doesn’t matter but actually were quite a significant portion of the population.

Mags  14:52

Absolutely. And as you’re talking there, Patricia it is reminding me of a tweet that I read from you during the week around people like yourself and and your colleagues with disabilities being invited to these decision making tables, or being invited to upskill people on disability awareness or be involved in research but for free. And then experts are brought in later, experts without disabilities who get paid.

Patricia McCarthy  15:23

Yeah, I suppose it really like, you know, we all do certain things for free, and we all, you know, volunteer for certain things, but it’s when there is this expectation that because we are knowledgeable in an area that we will, you know, train people or start the process for them when they’re trying to do something. And we’re brought in, and, you know, there are very few reasonable accommodations made to support us, you know, often, you know, they’re not even consulting with us in relation to where they’re expecting us to go to, to do the training or to, you know, give advice. But it is this expectation as well, that we will do it voluntarily. And we don’t, you know, we’re not our expertise is not being recognised or valued. And I think it’s, you know, again, this is disadvantaging disabled people on why we are really, you know, we really do want to push certain issues forward and ensure that disabled people have the same rights as everybody. We aren’t the people, and, you know, ask inviting us to contribute, also need to recognise that actually, if we are the experts, then our time and experience needs to be valued. And, you know, they can’t just expect those to contribute to things on a voluntary basis all of the time.

Mags  17:13

And Patricia, there’s two accessibility and engagement issues that you’ve brought up there. The first, and which I asked you about was payment. I mean, you are an independent adult who has bills to pay who has the life. And sometimes if you’re only offered this voluntary work, compared to people offered to pay work, at some point, you’re going to have to say no, which because you need to take the paid work, which means then you can’t engage in something that you’re passionate about, and that you could very much contribute to at a valuable level. And the second part was, when you talked about them, not even considering how they can make things accessible for you. I don’t know if you recall, but many years ago, we were both sitting on a committee where the meeting was outside Dublin, there were three busses, you could take the first both passed you by it stopped somewhere else. And obviously you didn’t see it, five metres up the road. So by the time you actually got the second buss and made it to the meeting, you were so distressed and exhausted from having to navigate that, that you were you were too tired to engage. And this was before Gaston. So you were trying to navigate all of this without Gaston. I don’t know if you remember, but actually, as you’re talking, I’m going that was a huge, like, so many barriers there. And you still got there and you still engaged, but it should not have been that hard.

Patricia McCarthy  18:44

Absolutely. And you know, you know, while there was no consideration given in those sorts of situations, and you know, I was lucky, I had your contact details, even just trying to find where the building was, you know, for bus, like when it’s outside of Dublin, like often, I suppose even just to give an example. And we were talking about additional costs for disabled people. Often if I’m going to someplace for the first time that I’ve never been to before. Within Dublin, I will take a taxi because I expect them to be able to get me to the location. And that’s an additional cost for me. And often if I’m expected to do something for free, that isn’t even being covered. So not only am I doing something for free, but I’m actually spending money to get to contribute to a discussion. And I suppose often as well with some of the voluntary things that we all do. You know, it’s very hard then to actually if that isn’t being valued by others. How can we evaluate ourselves and how can we post it on our CV as important work, if others aren’t seeing as, as important work. And for many disabled people, you know, they’re trying to build up a CV. And it’s, they’re not being facilitated because what they’re contributing to is not being valued by others.

Mags  20:28

Absolutely. And you raised that you raise an important point here is voluntary work doesn’t hold the same value as paid work when an employer is looking at your CV. You’re, seriously, we could talk about so many things here, Patricia, you will be delighted to know, I know you’re coming out and you’re presenting at the UDL symposium here in Maynooth, that we will be providing talk over videos of how to get from our train station and our bus to the building that the conference is held in.

Patricia McCarthy  20:58

Wonderful. This is what I really like to hear. And it’s really, you know, this is wonderful. And I know I’ve had a discussion with you some months ago, even like, even inside in certain buildings. Now I know in Maynooth, in the building that you’re working, there’s the numbers of the rooms are in Braille, yes, doors. Now, I’m not saying that every blind person can read Braille. But at least for those that can, they can actually find the room for themselves. Because I know the number is at a level where you can actually reach it’s not over the door, where numbers off an hour. And therefore, you know, again, that demonstrates an awareness around disability, it also gives somebody like me a sense that actually, I could belong in this building, because, you know, they have gone to the effort, and they’ve considered around access and, you know, providing the information again, in more than one format, it’s quite a simple thing to do, often. But yet it can make such a difference to somebody like me, just even like the height of the numbers, even in print over the doors, like even if you have some vision, it’s very unlikely, you’re going to be able to see the number over a door, because of the distance between you and the number. Whereas if it was actually on the door, you would have greater a greater chance of being able to see it. And that applies to so many things that, you know, I, I can’t count the number of times I go into buildings and the, you know, the information, the directions are written so badly. And the contrast in colour even is so poor, that somebody with useful vision, still can’t access the information. And that’s just often it just comes down to complete lack of awareness around, you know, and that information in, you know, clear contrast, good contrast, is beneficial to everyone. It’s not just to somebody who is visually impaired.

Mags  23:20

Absolutely. And you know something, it’s okay to have, at the beginning, a lack of awareness, if you go out and you find what you need to do. And that is one thing that I have learned, from my friendships with you and other people is that ask, ask the questions.

Patricia McCarthy  23:38

Absolutely. I think that’s the most important thing, like if you ask, and you and you respond to that, by by doing something that’s really good. You know, asking and not doing anything is not good. And not asking at all, isn’t good at all. And like, often, you know, we will suggest ways to make something more accessible. And if it’s taken on board, we will always acknowledge that, but the amount of times that people you know, hear what you say, but don’t actually or take in the information but don’t actually act on it. You know, that’s really disappointing. And I suppose it’s back to this, you know, we all need and I suppose I’ll just go to a minor plug in here  Mags. In July, hopefully, my colleagues, Mary Quirke, Conor McGurkin and  myself are publishing a book called adopting a UDL, adopting UDL in academia, and it’s around understanding and practising inclusion, but actually, everyone needs to adopt, yeah, UDL and UD and UDL practices, regardless of where you work. And that is what would make society, a more accessible place and space for people like me, you know, just even, you know, we all see the tactile paving on footpaths and things like that. And that’s really beneficial to me and to Gaston because he knows that when we come to something like that, he needs to stop to alert me to the fact that we’re coming to the edge of a path. And then I tell him to go forward if I think it’s clear to do it. And, you know, the same thing with traffic lights that have bleeps on them, you know, and I remember a couple of years ago, and all the bleeps were turned off on O’Connell Street. And when we asked why they were turned off, apparently it was that they were distracting for sighted people.

Mags  25:54

Oh, wow.

Patricia McCarthy  25:55

Yes. Now, it was rectified, and bleeps were turned back on. But like, the sighted people don’t need the bleep. We’re dependent on that bleeping system to enable us to cross the road safely. So the fact that it was even said that it was distracting for sighted people just appalled me.

Mags  26:23

I’m shocked. I mean, what an example ofableism.

Patricia McCarthy  26:28

Exactly.

Mags  26:29

So, oh, my Can I just say I love the bleeps. They’re not there for me. But as as you know, I’m always distracted. So the bleeps are telling me not to cross, oh, my goodness, I am shocked, we’ll have to talk about that another time, Patricia. But in terms of accessibility, we cannot not talk about Gaston, because I’ve seen the independence that he has brought to your life in terms of accessibility in terms of getting around. And actually do you know, something, I’ve also seen how people will approach you and start a conversation with you. And Gaston on is the the icebreaker or the barrier remover in situations,

Patricia McCarthy  27:19

Absolutely, people that would have never come up to me before are coming up to say hello, and nine times out of 10. I know it’s because they want to say hello to Gaston. And that is perfectly fine by me if I’m if we’re not in the middle of trying to cross the road. And you know, I suppose it’s wonderful to have Gastom and Gaston is great in that. He’s he’s one of these dogs that even if he’s never been somewhere before, he acts as if he knows exactly where he’s going. And he’s really confident and he’ll keep walking regardless of whether it’s going in the right direction or not. But even for finding things like doors and things like that, because of his training, he has been trained to, to get me to a door if I tell him to find the door. And often those sorts of things are to find the steps or you know, so even that sort of thing. And often is even by me saying that out loud to grandstand and he’s in the process of doing somebody passing or somebody standing will often then say, Do you need a hand because they hear me communicating with Gaston. And you know, like, for years, I had a white cane. I worked quite well with it. But like a lot of people didn’t seem to see the white cane or didn’t appreciate that because I had the white cane I actually don’t see. So they weren’t as forthcoming with assistance. You know, so I suppose that’s a big thing. And I suppose with the guide dog as well, like the cane, the job of the cane is to detect an obstacle, the job of a guide dog is to navigate the person around the obstacle. So it’s quite a difference. And Gaston does that really well. And because he’s quite big and apparently quite attractive, everyone thinks he, he has his own presence. Let’s put it that way. And, you know, so it’s made a huge difference to my life like I regularly have to attend hospital appointments and the clinics that I would go to on a regular basis. Gaston knows exactly how to get to them without ever been told to turn left or to turn right. You know, and it doesn’t end because I’m there quite regularly people also now recognise the dog and me and people that would have I would have been gone to the same clinics for years before I got Gaston, but the people behind the counters would have never known my name. And now I come in and it’s Hello, Patricia. And it’s because I have Gaston. And they have made this connection. So I think this has, having a guide dog has changed my life significantly. And like I only as you know, I got Gaston,  I brought Gaston back from training in Cork the week before the pandemic shut everything down in 2020. So we’re just over three years together. And I suppose the first year was a very strange year for for both Gaston and me, but. And even where I live, it made a huge difference to having a dog because neighbours and things are more likely to say hello to us now as well. I, I don’t seem to be as invisible as I was when I just had the white cane..

Mags  31:01

Absolutely. Yeah. And I have seen people walk in front of you when you had the white cane like nearly tip it out of their way. Whereas people pause when they see you and Gaston and it’s it’s amazing. I’ve also seen Gaston navigate you from dripping water and pipes.

Patricia McCarthy  31:24

Oh yes.

Mags  31:26

I mean, he’s a genius of a dog.

Patricia McCarthy  31:28

Well, that’s probably because he doesn’t like puddles himself. He loves swimming but he doesn’t like rainwater, and he will try to avoid that himself. But I’m not objecting to it. He’s very good. And you know, he’ll often he’ll find the lowest part of the curb to cross and things like that. Unless of course there’s a puddle there and then he’ll take me up the steps but yeah, you know, I’m definitely people will pause or people will step out of our way more. Now that I have Gaston, you know. Sorry, whereas they wouldn’t have before. Now I had an experience only a couple of weeks ago on Grafton Street. I was walking along with glanced on, and there was somebody on their phone, not looking where they were going. And they fell completely over Gaston. They fell and got up and walked away they didn’t even check to see was myself and Gaston ok.. And I have to say, I was more stressed by it than Gaston was. Gaston didn’t even blink. He didn’t bark. He didn’t do anything. But of course, I was then checking to make sure Gaston’s okay, because I, you know, I hadn’t quite seen what has happened. So I wanted to make sure that, you know, the person hadn’t stood on him or, you know, hurt or broken for him. So, but it was just, it was incredible. But again, people came up, you know, that had seen this happening and asked us where we Okay. And, you know, were very insistent that it wasn’t my fault that it was the other person that they weren’t looking where they were going, they were on their phone. And I’m not sure like, that person. If I just had the white cane, they could have easily knocked me because they weren’t watching at all. Yes. Whereas Gaston is quite solid, sturdy dog. So he he wasn’t going to fall over quite as easily as I would. Yes, you know,

Mags  33:35

But these are, these are the things that you have to think about. Every time you leave your house, you know, you have to have this extra awareness, and guide dogs don’t just appear. I mean, you were waiting a long time for Gaston,

Patricia McCarthy  33:49

And they’re not cheap to train either. Like one guide dog costs 57,000 to train. So like, there’s a lot of money and resources and time and training goes into a guide dog and I suppose because I have a physical disability as well as the vision impairment, you know, not every, well, not every guide dog is suitable for every person anyway. But because of my mobility issues, you know, there would have been a little bit more work gone into choosing a suitable dog for me. Because, you know, Gaston doesn’t take any notice of the fact that I have a pronounced limp and pull to the right a lot. He just plods along. Or when I’m walking up and down stairs depending on where the handrail is. And that’s another example like so many places, there are stairs and there’s only a handrail of one side and because I only have one strong hand or working hand the other one is just still support. And really, it can carry things, but it can’t, I can’t depend on it to hold me when I’m going up or down the stairs, I often will have to go up or down the stairs, either sideways or backwards. Because depending on where the handrail is. And like, that’s just another access issue that I face on a daily basis. When I encounter stairs where there are no alternatives of, of getting up,you know.

Mags  35:33

 and it’s such an easy fix, Patricia isn’t an inexpensive fix

Patricia McCarthy  35:37

Exactly. You know, and it’s just all sorts of, you know, and people don’t even think about it. And, and there. You go into so many places. And, you know, people say, Oh, are you going to be okay, on the stairs? And I sort of think in my head, I should be but it depends on where the handrails are, you know, so often, if I’m going to place for the first time, I will actually ask somebody to come with me if I have to go upstairs, if there isn’t a lift until I see where the handrails are. So you know, If I’m going up in front of in the regular way, that’s fine. But if I have to come down them backwards, which I often do, I prefer to have somebody with me where possible, just in case I miss the step, you know, but that just adds, and all of that just adds stress to your day. But it also adds, it’s more exhausting, you know, and I suppose that’s the good thing about universal design and universal design for learning as well. It part of, you know, if it’s universally designed, it actually minimises that exhaustion, because it takes those extra added difficulties out of the situation.

Mags  35:47

Yeah, Patricia,I mean, we could have at least four conversations based on everything that we’ve barely touched on today. But I know you have things to do. So just to bring the conversation to an end. And I’d love to continue it another time. But for today, are there any resources for further independent learning that you would like to share what else

Patricia McCarthy  37:27

I suppose keep an eye out for our book, which will be coming, but I suppose, you know, just there are so many resources about universal design and Universal Design for Learning. Like, you can find a lot of materials around Universal Design for Learning on the AHEAD website. And you know, that they cover a wide range of things. You know, I suppose, you know, we’re all working in the field, you have a conference coming up in May, I think, at the end of May, and, you know, so it’s, there are a lot of materials out there. You know, it really is, it’s the time to start really considering how you and whatever organisation you’re working for whatever institution you’re working, can make things universally designed for everybody. And not just, and I suppose this is the one. The one message I want to leave people with is, often when we talk about universal design and Universal Design for Learning, people think that’s only for disabled people, and those with additional needs. It’s not, it’s for everybody’s benefit. And the sooner we realise that, and the sooner we all realise that actually being universally designed and inclusive of all is beneficial to all.

Mags  39:01

Patricia that is a wonderful message to end on. I’d like to add one resource to your list, and that is Gaston’s Twitter account, because it really opens the eyes of sighted people to the life of blind people and visually impaired. So I know the Twitter account is at  Gaston underscore McCarty, am I correct?

Patricia McCarthy  39:29

Yes, absolutely. ( inadubile -two voices at once)So I would Iwill definitely follow you back. And you can watch you can follow all these activities there.

Mags  39:40

Patricia on that note, I would like to say goodbye to everyone. Thank you so much for joining myself, Patricia. And of course Gaston. I know he’s napping but he’s there for talking about all things inclusion, and I hope that you will all join me again soon. Thank you so much Patricia for sharing not only your personal experience with us but also your expertise with us today

Patricia McCarthy  40:03

Thank you very much Margaret and I really appreciate having the opportunity to talk to you and your listeners