Advocacy Talks episode 6 - Being proud of blindness with Bobbie Hickey

On this episode of advocacy talks we catch up with Bobbie Hickey, who recently wrote a really interesting article for the Irish Times. With this month being disability pride month, what does it mean to be proud of something that so many people fear?

Bobbie also discusses her journey seeking support, and why it’s important to ensure you feel in control when doing so.

Want to get in touch with the advocacy team? Send an email now to campaigns@VI.ie

Transcript

SPEAKER_00: 0:00

Welcome to Advocacy Talks, a podcast from the advocacy team at Vision Ireland. Here's what's coming up on this episode.

SPEAKER_03: 0:10

I'm not embarrassed about it anymore. I'm not ashamed about it. You know, there's, I think, far more interesting things about me other than my disability, but it's not a topic that I'm shying away from. It's not something that I kind of avoid talking about, whereas previously in my own experiences and my own journey that I've gone on, I would have been really offended. And if someone called me disabled or blind, I would have taken that as an insult.

SPEAKER_00: 0:34

And now here's Madeleine McNamara.

SPEAKER_01: 0:38

Hello everybody, Madeleine here and you're very welcome to Advocacy Talks with Vision Island today and thank you so much for joining me again. On our last podcast, I had a fascinating conversation with Titi Matsunen, who is actually the president of the European Blind Union. And we had a great conversation about her role, but also about what it's like living in Finland as a person who is blind or vision impaired. So I have to apologize that the sound quality on that on her side is not very good, but it's not her fault. It was totally down to technical issues at our end. So apologies for that. But if you can bear to give it a go and listen, it was really worth listening to because she was a very fascinating lady. Well today I'm joined by another fascinating lady. I'm joined by Bobbi Hickey who works in the equality, diversity and inclusion space. She's also a service user of Vision Ireland and is completely blind. So welcome to the podcast.

SPEAKER_03: 1:40

Thank you so much for having me Madeleine, I appreciate it.

SPEAKER_01: 1:42

Oh, you're very welcome. You're an amazing lady. I see you all over the place in LinkedIn, putting up amazing things there. But recently you had an article in the Irish Times.

SPEAKER_03: 1:54

Yeah, yeah. I fell victim to the LinkedIn bug. I previously wasn't a big fan, but I've gotten a little bit better at it now. Yeah.

SPEAKER_01: 2:04

Well, I think you're very good. You're definitely getting the word out. And, you know, you're an amazing advocate, I think, in the space. But just saying, how did the article in the Irish Times come about?

SPEAKER_03: 2:17

Yeah, thank you. So I previously in about 2018, I would have been a part of a column series in the Irish Times called the Platform Series and a basically kind of. put a spotlight on what it's like living with a disability in Ireland, growing up in Ireland with a disability and everyone's different journeys and different experiences. And I would have gotten that opportunity actually through Vision Ireland or NCBI at the time. So to be honest with you, that lasted about a year. And ever since then, I kept the editor's email. So I can't just tend to send him my little drafts or my diary entries and see how far I get. So in fairness to him is Damien Cullen is his name. And he's the editor of the Health and Family Supplement. And he's really good. He's very supportive. So in fairness, that's how I did it. A little bit cheeky of me. But if you don't ask, you'll never get.

SPEAKER_01: 3:06

Absolutely. You have to be proactive in these things. And I It's certainly a really interesting article. And for those people who may not have seen it, maybe you could just tell us a little bit about what you were saying there. I mean, it was about being proud of disability, I think, of your disability, but also, you know, the different ways that people react to the fact that you're blind.

SPEAKER_03: 3:28

Yeah, I think I was telling someone about my article and the content of it, and they turned around to me and they were like, but are you proud of your disability? And for me, the main thing is, I'm not embarrassed about it anymore. I'm not ashamed about it. You know, there's, I think, far more interesting things about me other than my disability, but it's not a topic that I'm shying away from. It's not something that I kind of avoid talking about, whereas previously in my own experiences and my own journey that I've gone on, I would have been really offended. And if someone called me disabled or blind, I would have taken that as an insult. So in my own journey, that's just something that I'm really proud of. myself and the kind of the times that I've been through that I'm no longer embarrassed and I don't run away from it anymore. The article was about that journey and the kind of the times that I've been through and the experiences that have led me to where I am today. And also, I suppose over the last two years, I've lost all of my sight due to a series of unfortunate events, we'll call it to keep it simple. But now it's pretty much all gone. So I now I'm fully blind for the first time. And I suppose it's about my kind of narrative I have in my head of, yes, I am proud of being blind, but also the efforts that I go to to not come across as blind because of society's norms and the ideas that people have about people with disability in their heads and how we're painted out to be less than sometimes. I go to massive lengths to make sure I don't look like a poor blind person, if that makes sense, because whenever I tell people that I'm blind they're always oh my god I didn't realise you were blind as in jeez I didn't realise someone could be well dressed and blind I didn't realise blind people were allowed out on their own you know what I mean I didn't realise blind people like cocktails like all these things that are just part of normal life but for whatever reason they're just not seen to be part of having a disability. So the article was about tackling that stigma that we all have, like we all have unconscious biases. You know, like just because I'm a person with a disability doesn't mean that I don't have biases towards other people. It's part of being a human. But I suppose the article was about tackling that and through no fault of our own, it exists. So it's just about the kind of inner dialogue that I would have.

SPEAKER_01: 5:42

Yeah, and it's a huge pressure then on you and on people know other people who have disabilities but you know particularly we're talking today about people who are blind or vision impaired so that's a huge pressure that you have to feel you know that you don't want to look blind and and i can identify with that certainly um in my younger years um i'm also you know vision impaired i do still have some some useful sight but would be um kind of at a level that's counted as blind but i have sight so you know um but certainly i know that in my in my young days no i did not want anyone to know I couldn't see. So I wouldn't use a cane, a simple cane or anything, and just got out there and didn't want people, didn't want anyone to know. You just want to be like everybody else. But it is that kind of competition is in a way in your head, isn't it? That on one hand, I found anyway that I didn't want people to know I was blind, but I still wanted people to give me help if I needed it. You know, you want people to recognize

SPEAKER_03: 6:43

in some ways as well. It's almost like you want to... We'll talk about it when it's relevant, but then as soon as it's not relevant anymore, okay, that's fine. Enough now. You know what I mean? We never had that conversation. And I think it's just about... like something that I find fascinating is when people realize that I'm blind, it's almost like, OK, now I just have to make sure they still think of me the same way they thought of me before. Just as, you know, a girl like at the dog park, for example, just sitting there, her dog's playing, whatever. Like when I bring Josie to the dog park, everyone's always like, oh, are you walking her for your blind friend? No, if I was doing that, she wouldn't be in the harness. You know what I mean? So it's just about kind of keeping up that same level of of respect, expectation, and I suppose just common decency when it comes to people thinking the same of you when they realize that you have a disability. I find it so insane that people don't think I'm blind. I suppose for a perspective, my eyes do look different. I would think they're quite obviously different. I obviously can't see them, but one is quite big and one is really small. So I kind of look like an emoji. So it's quite obvious. And like, that's fine. It doesn't bother me. I wear sunglasses when I'm outside anyway, purely for protection purposes. So people often assume that I'm not blind, but that's hilarious because I'm completely blind. And I know people that have a little bit more sight than me are still legally blind, but they have a little bit more sight than me. And people are like, oh, yeah, they're definitely blind. And I wonder then, is it a thing of the people that have a little bit more sight than me, but are still blind? Are they trying to use their obviously their usable sight that they have, which is great. But then I suppose. it's a little bit more challenging to do that so maybe that makes them look more blind and I'm just like well there's no point in trying so I'll just I'll just ignore the fact that I have the eyes you know

SPEAKER_01: 8:40

yeah it's a tricky one because yeah my eyes would look very different as well and so when I was younger I didn't have any kind of glasses or anything like that so you I think it was fairly obvious but to me I I didn't I suppose wasn't so aware of that and I just went on as if nobody could tell you know but then now I have I have glasses and the the funny thing is that I think in some ways that doesn't that makes me look not blind because my eyes are very small and so without the glasses it's very obvious but of course the glasses are so the magnification on them is so huge that I think it probably makes my eyes look more normal do you know yeah

SPEAKER_03: 9:13

so I think glasses are so normal now anyway though like like glasses are so common blindness is so common obviously legally blind that's that's a step that's a bigger well I think it's that

SPEAKER_01: 9:24

It's that weird thing that glasses are so common, but I think blindness is not so common. And what I find interesting is that people assume that if you wear glasses, it must fix it. You know, so because you're wearing glasses, you must be able to see fully. And I think that is what people find difficult, that, no, I have glasses, but I still only have 10% sight. You know, so it's like, oh.

SPEAKER_03: 9:44

Yeah, yeah. Like when I was younger and I would wear glasses and they were just for protection. And everyone, oh, like you wear glasses, so can you see the board in school with the glasses? And I was like, no, no. I didn't realise that people would wear glasses, you know, to help their sight. Now, that was when I was very young, like we're talking like seven or eight.

SPEAKER_01: 10:01

But

SPEAKER_03: 10:01

I didn't realise that actually glasses had like a function that could be to actually help your eyesight. Whenever I was younger, everyone was like, oh, like, you know, what's wrong with your eyes or whatever, and they would automatically assume it's a lazy eye. And obviously, yes, they're lazy, but not in the way you think.

SPEAKER_01: 10:20

Yeah, exactly. I think it's a really daft medical term for an eye condition, I think, lazy eye, because I don't think anybody's I don't know. It's very literal. It is. It is. It is very much so. But then you get the reverse then when people come in a group of people and people will be saying, oh, gosh, I'm totally blind. You know, I can't see anything. You know, when I get up and I can't find my earrings and I can't find my bloody blah. But then they put the glasses on and they've got 20-20 vision. And it's just like the disconnect. And they're sitting there and I'm in the group and they know that I have, you know, problems. And there's just that. Just total lack of recognition of the difference between them struggling first thing in the morning to find their glasses and me not being able to see well the whole time. Yeah,

SPEAKER_03: 11:12

that's very interesting. And like, obviously, when people are insensitive about it, that's a different story. But I have found the opposite that way. a lot of people that I would speak to would be quite awkward about using the word see in a sentence like oh see you later oh sorry I didn't mean see I meant I'll talk to you soon and it's like oh my god can we calm down please I was walking the other day like last week um and obviously obviously no sight so I kind of geolocate with my ears um and there was a group of people in front of me and Josie had stopped walking and you know you're going to find the way and there's no way so she's just stopped and there's a group of people there and they're minding their business having a conversation blocking up the entire path but that doesn't matter um and I was just stood there and one of the women again with Josie in the harness one of the women turned around and just went are you okay and then I was like oh yeah like I'm Grant and in the same sentence she saw Josie and went oh Jesus sorry I'm blind as a bat and then just no apology and usually when people say that to me they're like oh my god I'm so sorry and I was kind of like I appreciated just the normality of that sentence. And I don't mean that she was being insensitive because she wasn't, but that's a normal thing to say. You know what I mean? Like that just comes out of people's mouths in the same ways. Oh, see you later. Like I say, see you later. I say, oh, I'm going to go to the cinema, see that movie. Like, no, I'm not. You know what I mean? But it just gets too difficult to be entirely politically correct all the time. And I appreciated how normal she was and how she didn't other me. if that makes sense. She was just, oh, blind as a bat, sorry.

SPEAKER_01: 12:45

No, I think that's a really interesting story actually. It does highlight that because people can get so wound up on language and it is a very important thing and the language that we use can be crucial and we do need to be mindful in many circumstances of the language we use to describe things or to be mindful of how people want to be addressed. But at the same time, yes, that kind of normal patterns of speech that we have, as you say, I don't want to be made to feel different. I don't want people to stop saying C or any of those things because it just makes you stick out. Yeah,

SPEAKER_03: 13:21

no, exactly. And again, I'm not talking about... You know, there are parts of language that are to do with respect and dignity of others. I'm not talking about that. And this person was not being disrespectful at all. It was just a turn of phrase. And loads of people, if they had said it to me before, they would have been terrified that they would offend me. Like, if you offend me, you deserve an award. It takes a lot. It's not going to happen. And I think that's the same for anyone who I've met who is extremely, like, outwardly comfortable with their disability. At the same time, it would take a lot to offend them. So chances are, you know, you're not going to be rude. It's not, you know, that's a different thing. But just ask if you're if you're nervous. And if you if you do feel like you made a mistake, then make a joke about, you know, jokes on you, you know.

SPEAKER_01: 14:07

Yeah, I think humor for me is often my go to, you know, it would be my way of if I feel like, you know, because you do feel embarrassed if you do something wrong. that you feel is stupid. It is not stupid. You couldn't see you did something, but you, you did something and you feel daft and whatever. And my go-to was to make it like joke of it. Oh, you know? Um, so I think that it is a very powerful, powerful tool and I think it can help other people to not feel awkward as well. Um, that, that you're okay with it and therefore they can be okay with things. And I, and I think that that's, but it, but it's can be difficult for some, you know, not everyone is able to do that. And I, I think this is, Always the problem with everything, isn't it, that everyone is so different. There is no two people the same. And the way people feel about themselves and about their disability and all of that, it changes as well. You know, so certainly for me, when I was very young, I didn't want anyone to know I couldn't see properly. and still wouldn't use a cane and then now that I'm a bit older so shall we say a bit more mature I do now use a simple cane and I'm okay with it whereas I would not have been okay when I was in my 20s so I think it's interesting but now I kind of recognise what does it matter if people can tell I can't see now it's an advantage because occasionally they offer me a seat on the train or you know I might not get run down by the car when I'm crossing the road So, you know, I think it is an interesting one.

SPEAKER_03: 15:42

Yeah, absolutely. And I think everyone's experiences, and like you were saying, Madeline, about people's feelings towards their disability, they change all the time. Like when I was growing up, my parents, sight has never been fantastic. It was a lot better than what it is now, obviously. But when I was growing up, I was in and out of the doctor's office all the time. Surgery was a very big part of my life and still is. So it was in one way, it was extremely obvious to me that I couldn't see. But it was like I would leave the doctor's office and go, that's that now. I can stay there. And I go to school and go to my swimming or whatever, horse riding, whatever it was that I was doing. And I just live my life. And, you know, it would I can't remember if it was at the back of my mind or not. I presume it was to an extent, again, because of all the surgeries. Like, I'm talking every six weeks.

SPEAKER_01: 16:31

Wow, so very frequent.

SPEAKER_03: 16:32

Yeah, so, like, that's going to be in the back of your head. But, like, it wasn't to the extent that I developed feelings towards it, other than the feeling of hatred. And then when I was 16, I was very stubborn walking in to do my junior cert exam and And I was crossing a massive road and I got knocked down by a cyclist. Oh, wow. Yeah. And I remember I went home later on that day back to my mom expecting sympathy. And my mom straight away was just like, where was your cane? And I was like, in my room, like where it should be. You know what I mean? Tucked away. Oh, the poor cyclist. And I was like... hello like did you hear both of my shoes came off I was airborne like what um but obviously you know she was right at the time because your mom had no idea what was going on and now I feel bad for him because he did nothing wrong you know it was it was actually me that was in the wrong because how was he meant to know that I couldn't see it from his point of view I walked straight out in front of him yeah um so ever since then I I used the cane I used the cane for five years and then got Josie which is he was a lot cuter than the cane um and I found the cane to be a social deterrent, like it was horrendous. And that's just my experience. I know loads of people that have had really positive experiences with it. It's a personal thing. But my whole life changed when I got Josie. But I suppose at that moment, then I was like, well, I have no choice now. You know, I've been so stubborn up until that point. But it was then obviously a safety hazard. Like, thank God it was a bike. So then at that point, I started to acknowledge it more, think about it more. And within two years, I had really... really kind of grabbed it and you know like made it a brand as such um and and tried to work with it as best as I could and there were obviously aspects of it that I was still stubborn towards like I was allergic to screen readers up until two years ago when I lost all my sight and I found myself in the exact same position I went okay well if I want to continue to work I need to learn to use how to like how to use a computer um so I need to use screen reader and shameless plug I would not have been able to do that without Vision Ireland like they were absolutely incredible the VI Labs team were amazing like there's no way that I'd be doing what I'm doing today without them and I said to them Dorian was the guy who gave me my first lesson and I said look This is really stressing me out. Like, you don't understand how stressful this is. I need to go so slow. I am having a heart attack. And he was like, we haven't even turned on the computer. Like, what's going on? But Dorian and the rest of them as well, patients of a saint. And so they really supported me and got me through that. So even though I had developed such positive feelings towards it, I still was so stubborn about it. And I think it's that internalized feeling. ableism that a lot of people with disabilities have no I will not use a screen reader I don't want to be the one whose computer talks to me you know I can read I will use the eyes that I have um which to an extent yeah if you still have workable vision 100% take advantage but also my life would have been so much easier I would have been so much more efficient if I did take advantage of the screen readers um that I use today so yeah it's a mixed bag I think everyone goes through their own journey

SPEAKER_01: 19:47

They do. And I think that, you know, that stubbornness, you know, although in some ways you'd say was, you know, a disadvantage, you could have done things better, but it also gave you determination that you did still get on and do. And it's kind of trying to get that balance right, I think, between, you know, not... It can be very... It's a slightly different thing than using the screen readers, but it can be very easy to let someone do things for you. And rather than trying to do it yourself, you know what I mean? It's kind of like that in a way. So it's sort of... You know, not giving in, I guess, isn't it? A bit. But knowing when the time is that you need to take on that extra bit of support, whether it be a screen news or whatever. I actually think another really important thing is the people around you, the people in your life. You know, and you're talking about your mum there and her attitude. And it sounds like, you know, your family was just so wonderful in the sense that they didn't wrap you up in cotton wool. and stop you from doing things. And I think that's so important because if we don't get that kind of, you know, I have had sight loss since I was a child and I was very lucky to be surrounded by people who, again, just sort of, you know, yeah, you just get on and do things. You're in the family and you have to do the washing up and do whatever the other things everyone else is doing. And I think that that is so important because it gives people that belief and it doesn't make them feel different. And because we can, you know, we may have to do things in a slightly different way. But there's most of things that anyone else can do. Someone with sight loss can do, too.

SPEAKER_03: 21:23

One hundred percent. And my family have been amazing. There's no way that I would be. I would have the same attitude that I have and the same perseverance and everything that I have without my family. They've been amazing. instrumental in developing that resilience and developing that need and the desire to do more, achieve more, get up every day and do life. You know, it's not that I want to achieve more than anyone else, but also when you do have a disability, I think there is this feeling of a race that you're always trying to keep up or sometimes overtake your peers. And sometimes that's really hard. Sometimes it's possible. Sometimes it's not possible. But it is about leaning on the people in your support network that you have, but also while maintaining that slight level of control. And what I mean by that is I didn't go to Dorian for those tech lessons until I needed to, until I wanted to. You know, I was in control of when I started that. And then that's not to say, you know, obviously going forward then when I was, okay, I've acknowledged that I'm doing this now. I'm in this journey. I'm going to work with Dorian and his schedule. But the key is that I started when I was ready. And there are loads of different ways that you can do that. Like that's about the tech sense. But like when you have to ask for help for whatever it may be, what helps me is just maintaining that slight level of control. Not to the point like you other people might not realize that you're doing it, but just in your head, you know what's going on. You have a plan and you know why and what you need from what you're doing and why you're doing it. That's really important. But the people in your life are what keep you going they're what build you up um and they're what knock you down a few pegs when you need that too that's good if you get two big

SPEAKER_01: 23:08

people exactly like like everyone else no i think that that's a really good point you know as you say having having the control and knowing what when it's right for you uh because you know we're all that you know telling people saying to people you should be doing you know why don't you use the cane or why don't you whatever but if they're not ready you're not ready And I think there's just so much built into all of that, isn't there? As you said, it's about acceptance, I think, a lot of the time, isn't it? As to what you're ready for in terms of your journey. And that's just so important that that is down to the individual. And we can give people advice and support, but at the end of the day, it's their choice. And I think that's really important.

SPEAKER_03: 23:54

That's the thing. And it's not to say, you know, Take control, be controlling. I'm not saying that obviously that has a negative connotation to it. I'm not saying that you need to go around being a controlling person because you're not going to get very far doing that. What I am saying, though, is in your head, you need to go on that journey and go on that kind of open up that conversation in your mind so that you realize why you're doing this. what you want out of it and how you would like things to proceed and when you have that understanding in your head and you develop the actual desire to do it all of a sudden if someone goes actually i can't do it that way but i can do it this way that level of control that you thought you have it might dwindle a little bit but because you've developed the urge and the passion for it it doesn't matter so much but it's about developing that real want and desire to do it in the first place um and i think that's the most important thing because a lot of people with disabilities would find that their minds are made up for them, that their voices are taken away by others in the room who say, no, no, sure. She won't do that. Or even like when you're out, um, and you're ordering something at a restaurant, for example, and the person is taking the order and they look at your person who you're with and they go, what does she want? She goes, actually, I'll tell you what I want, thank you. So that's what we come up against and that's what we're so afraid of. So that's what I mean by taking back the control in your head. It's not to be a very controlling, abrupt individual because that's not nice.

SPEAKER_02: 25:18

But

SPEAKER_03: 25:19

it's important to develop that autonomy in your head. And then all of a sudden when someone goes, I can't do it that way, but how about we do it this way? Okay, yeah, no problem, because I now really want to learn how to use a computer.

SPEAKER_01: 25:31

Yeah, yeah, no, I think that's so important. So, I mean, what would you say would be your message to the sighted community, if you like, in terms of how they should interact with somebody they come across who's blind or vision impaired?

SPEAKER_03: 25:45

I, that's a big question. I don't know what the, there's lots of messages, I think, depending on the time of day. It's only awkward if you make it. Yeah. And it's only as big a deal as you make it. A lot of the times people who are blind or visually impaired will know what they need. to get them through the situation or so that they can be the most productive. In work, I know what supports I need so that I can be the most efficient and the most productive for the company that I work for. When I'm in a social situation, a lot of the time I don't need any extra accommodations. That might be different for someone else. But if you say, hey, we're about to go into a place, the lighting is really low and the tables are really high. Would you prefer if we sat outside or what works better for you? The person who's blind or visually impaired is going to have an answer to that, and that might be, it makes no difference, or I'll give it a go inside, and we might go outside if it doesn't suit. You have to remember, and I made this joke a few weeks ago, that a lot of the time, depending on our age and how long we've had our visual impairment for, I call myself a professional blind person. I've had 20 years experience, 26 years experience, and I've never taken a day off. So I know what I need in a lot of situations. If I don't know what I need, the more information that you can give me about the situation, the better. But a lot of times, from my point of view and in my experience, this might not be the same for everyone, but I have found that the people that don't have any disabilities are always more stressed than the people with disabilities.

SPEAKER_01: 27:13

Yeah, interesting. And again, I

SPEAKER_03: 27:15

don't know if that's a sweeping statement and I'm aware of that. It might not be everyone's experience, but that's my point of view from it sometimes. And if you think about it logically, I'm not going to put myself in a situation where I don't think I'm going to thrive. If I don't think I'm going to thrive in a situation, chances are I'm going to have a lot of people around me that I know I can rely on and ask for support so that if I do feel like I'm crashing and burning, I can get out of there before the fire starts, you know? So... Trust us and trust that it's only as awkward as you make it.

SPEAKER_01: 27:48

I think that's a very good, very good advice. And I think if we can get that message out there, that would be job well done. Absolutely. Easy peasy. Easy peasy. Exactly. Easy peasy. Well, thank you so much. It's been really fascinating talking to you today, Bobby. I really do appreciate it. And, you know, Bobby alluded to the services that she's availed of in Vision Island. So if, you know, anything is going to touch a chord there with you and you feel that you need support from Vision Island, you can always look on our website which is www.vi.ie or you can call our information line on 1-800-911-250 that's 1-800-911-250 well thank you very much for listening everyone and we'll talk to you next time bye bye

SPEAKER_00: 28:42

Thanks for listening and see you next time.