'A little bit more respect': Sally and Wendy share insights on ageing with a disability

Sally: What are some of the best things about being older?

Wendy: Is there any? (laughter)

Sally: I was about to say the same thing! Actually I suppose people give you a little bit more respect. But that's probably about it. People do talk to you differently. I suppose people might take a more authoritative tone when you're a kid and maybe a less authoritative one when you're a peer, not sure.

Wendy: Say, even if you're at the cafe and you asked for something, like sometimes people's responses are different?

Sally: I get super frustrated when I go up to the counter and I ask, "Oh, what do you have?" because I can't read the menu or the sign. And I'll say, "What do you have?" and they'll point and go like that. And I suppose I never thought about it, but getting older, you have a similar sort of thing with reading menus and things as well. So maybe we just had some of the stuff a lot earlier.

Sally: But what's the best thing?

Wendy: I suppose you do inevitably… because you got older, you lived more, you encountered more. And you learn and start to see more and then by understanding more of other people's point of view that you didn't before. That's true. Yeah, and it doesn't have to be just disability, it could be just life in general.

Sally: That's very true actually.

Wendy: It kind of helps you because we I feel like because we quite often feels like no one understands you because of your disability particularly if you have a complex one and I think getting older and Sort of also seeing other people's perspective more just by default of getting older and having different life experiences Kind of helps me deal with it a bit better.

Sally: Nobody understands me

Wendy: Yes, nobody understands me. It's still the same but “nobody understands anybody else” is coming through more rather than just nobody gets it.

Sally: But when people are identifying as deafblind, they will say I'm just getting old and so you'll get a lot of people saying they haven't had difficulty hearing and seeing in senses, but very few that actually say that the deaf one is a disability. It's more. I'm just getting old

Wendy: That's because for a lot of people, we are getting old.

Sally: Well, I suppose that's true (laughter).

Wendy: I feel like I'm not the kind of person who thinks about it consciously until when something happens that reminds me that I'm disabled or make me feel old.

Sally: That's a really good point though. It's not about ageing but it's about disability. If somebody else makes me feel disabled, then it comes back to that age-old society that disables you. But like the bus thing, I didn't think of myself as disabled getting on a bus until someone said, "No, you can't come on with a guide dog."

Wendy: Yeah, it's not something that you go, "I'm disabled" until something happens that makes you feel disabled.

Sally: But I wonder if it's the same with ageing.

Wendy: Yeah, when something happens, when you feel old, like all of a sudden, kids that you grew up with now have kids. I went to a support group recently, a low-vision specific support group. The introduction was, "I'm so and so, I have so many grand kids." Like I’m the only one going, “I'm so and so, I have a guide dog." But it does highlight the fact that a lot of people acquire disability because of old age or they acquire the disability later in life.

Sally: But then I see it as old age.

Wendy: Yeah, I don't know. I suppose it depends on the cause of it if it's degenerative.

Sally: But then if I look at the EDS stuff, I could say I'm sore because of the EDS. My joints are sore, but I could also say my joints are sore because I'm getting old. So which one do I choose?

Wendy: You can't really separate it out properly. It's harder to do it when you get older. It's easy to do when you're young, quite clearly. That's just disability on its own. But as you get older, it's harder to separate out and you don't. You just move on with life.

Sally: I suppose it kind of, if we look at the intersectionality of the things that we have, like deaf-blindness and other things, I wonder if you put ageing in there if it just becomes too hard and you just give up on saying the others. I don't know. Or give up on trying to explain. I wonder if it all just becomes too hard.

Wendy: No, I think it's often just easier to go for "this is what I need” in terms of resources or help and just focus on that

Sally: But we kind of need to change the society's attitude to go with it because you can say what you need But then people are always questioning it like you like you can see why do you have a guide dog? Yeah, I can see a little bit sometimes Well most of the time for me a little bit most of the time

Wendy: What we do and how people observe what we do is / could be quite different. I think that comes back to what's good about getting older is that you start to appreciate more that everybody has different challenges like a headache to us could be a different headache to somebody else but it's equally real to both of us.

Sally: That's a good point too.

Wendy: And so you're more tolerant, more aware, more ready to accommodate and accept that's their status quo and you work with their status quo.

Sally: But I think that comes with being disabled as well. I think that actually I don't know, I don't know what anyone else thinks but perhaps that comes with being disabled that you're actually more tolerant and not tolerant but you pay more attention to other people's needs than you would if you weren't. I mean I find myself doing that.

Wendy: Maybe because we have that issue therefore we are more aware of other people.

Sally: That's what I mean, that's exactly what I mean. Yeah what do you mean? What makes it work for you?

Wendy: When I was finishing college and going to university. And whatever I wanted to do, we just went, we just did. Like I never had to go, “oh, is this gonna work, what's it gonna take, how much time do I need to recover? What do I need to prepare before and after?” So many things to try and troubleshoot and manage both the dog and myself, my own energy, one of my health crashes. That happens because that's what life has taught me through the last, whatever, 20 years that I can't just up and go do it and do things.

Sally: That's a really good approach.

Wendy: Whereas back in those days I did. I just up and did whatever.

Sally: I think that comes back to what we were talking about at the beginning. I don't think I could cope with shift work now. I used to do shift work and there is no way that I can't cope without the right amount of sleep now. Yeah, so. Or sleep that's disturbed or different patterns.

Wendy: You can't just go and do what you want, when you want.

Sally: You have to plan it.

Wendy: Yeah, and then you have to have Plan B. Yeah, have Plan C (laughter).

Sally: So what do you think you've managed to adapt to as you've got older, disability-wise or life-wise?

Wendy: To be honest, I think we're just constantly adapting to you, don't really consciously register it. Like you only consciously register an adaption as needed when things stop working, when all of your work around just stops. Like, for example, let's pick on technology, right? Technology works. Everything's fine. It's accessible. You do VoiceOver, you do magnification. Then somebody updates something...

Sally: And it breaks everything, yeah.

Wendy: And then nothing works. And it's got nothing to do with your ability to operate it. If somebody changed the system in a universal way, that could still work for everybody else, for example.

Sally: I mean, I've got a good example, actually. At my work, just that. At my work, we moved from, I had an office for nine years, and then we moved to Open Plan, and the lights are bright, there's a lot of noise around, and me hearing impaired, and vision impaired. The bright light, the sound bouncing off things, And the need to move my assistive tech into a meeting room which is not always available just to take a phone call or do a Zoom meeting or something is super frustrating because it's not possible. And I think when I was younger I just sort of go, "Oh, I'll put up with it, and I will do my meetings in there even though I can't see what I'm doing on the screen, I will pretend." But now, I just don't have the energy to do that now that I'm older. And I'm like, oh, okay, this isn't working. What do I do? Um, yeah. Is that a kind of example you were meaning?

Wendy: Yes, and I think at some point you adapt to a point and then you just choose not to.

Sally: Because I'd say taxis. I used to... taxis as well. I used to say, no, I'm not getting taxis. No, never. And now I use taxis about half the time because I'm just too tired and travel is tiring. And I don't know if that's an age thing or a being disabled thing.

Wendy: I don't know. I think I've moved from the default mode of let's work out how I can make this work to "Oh well if it's too hard basket, I'll do something else." (laughter)

Sally: So how has my experiences with a disabled person changed over time? I think acceptance of it. I mean at first I up until I left working in the Emergency Department I would not accept that I was disabled even though technically I was. And it wasn't until I couldn't do night shifts anymore very easily that I changed my mind and stopped working in the Emergency Department and that's when I started to accept things. I meet MSD's criteria to be totally blind as you do, but I don't count myself as totally blind because I have a little, a little, a little bit of vision. So it changes whether you accept it, what you call yourself, the language you use, and how much, in my case, crap you give yourself or for actually not doing stuff. I mean, I used to be really hard on myself to the extent of, well, just really hard on myself because I couldn't do everything they wanted to do. And now it's more about I'm equally bringing something else to society and I'm equally bringing something else to my job and it's about what I can give rather than how people perceive me.

Wendy: I think maybe when I was younger and disability was more about a particular impairment or a particular thing that's wrong.

Sally: But did you see it as society though? I'm just thinking, did you see it as a deficit?

Wendy: Yeah. Cause that's how we were labeled. And that's how we were categorized. And you saw yourself and other disabled people as-

Sally: A problem?

Wendy: I mean, not a problem, but you had difficulty doing something that other people could easily do. So therefore, the issue is on your side.

Sally: So what kind of age would you like to travel back to or what kind of age are you looking forward to? I wish the EDS had been diagnosed years ago because I went through some eye surgeries and the skin didn't heal over them. And if I'd known about the EDS, they would have got them to do it differently and done a skin graft to... to, um... beforehand. But that's quite recent. That's only about five or six years ago.

Wendy: I think there's probably lots and lots and lots of moments like that.

Sally: Yeah, there's lots and moments like that.

Wendy: You know, like after the fact, hindsight is always perfect.

Sally: What about a do-over at school? I mean, I used to have a cane at school, but my eyesight wasn't as bad as it is now. And I used to hide it. I used to hide it behind my back so people didn't see it when I was using it. And I'd probably do it differently now. I'd probably be a little more open.

Wendy: I refused.

Sally: Well, I refused for a long time too.

Wendy: I refused and I wasn't made to use it.

Sally: I wasn't made to use it either.

Wendy: I think you start using it when you realize that it's safer to use it. At some point, safety trumps whatever it is.

Sally: I think I fell on my bum in a bush once and that's what maybe decided to start using it.

Wendy: My family were immigrants, if go back to the point where we first moved here, I think I was 12 and didn't really understand English very well. So there's probably choices that was made for me that I didn't get an input on.

Sally: Actually it's really interesting. I don't think my parents either understood it. I honestly don't think my parents understood the vision stuff. My hearing came on when I was an adult. Well, I think it was actually probably there, but I compensated better. And, yeah, I think I just compensated better. It got to a point where I couldn't anymore for the hearing. But I don't think my parents fully understood or understand, or even my mum doesn't know a lot of the time. And I wonder if it's kind of my fault for not explaining it, or her’s for not asking. It's no one's fault, I guess, but it's just interesting that when I understand it better, I feel better. But it's weird.

Wendy: Are there life lessons that you would like to tell your younger self?

Sally: Yes, don't resist as much and don't try and hide it for as long because things became a heck of a lot easier when I started accepting that I couldn't see well and when I got my first hearing aids it was a lot easier and I went through a long time just ignoring it and just tracking along thinking it was normal.

Wendy: I think that reminds me because when you are young, you get sold on so many ideas, right? People say, "Well, you can do anything."

Sally: Yeah, and you believe them.

Wendy: And you go, "Oh yeah, I can do anything." Even though you know you can't do everything or anything. But at that point in time, you are bound to believe them. You are bound to behave as if you do believe it. And then I think that creates more of a let down or more of a struggle.

Sally: I think it puts pressure on, for me it put pressure on myself to succeed even more. And I feel like that I've pushed myself beyond what I probably should to achieve things. And it's like when you work all hours that there are, when someone else would work eight hours and get the same amount done. And you push yourself and push yourself and push yourself, I would probably reconsider that and try and think about working smarter rather than harder earlier on in my life.

Sally: What do we gain out of intergenerational relationships? I mean, I love with the younger generations coming through that it's kind of interesting because most of my generation won't do social media. Most of my generation don't make things or put themselves out there, but I think I can actually do that kind of stuff because I had younger friends and I can manage to use it as a platform to advocate, whereas I don't think a lot of the people my age or older would do that. I don't know, and then older people, I think we can get wisdom. And I think when I was younger I didn't listen to a lot of people who are older than me, as most people don't. And I do have friends who are retired now. I have a cousin who's in her 70s and they hang out with her when I'm in England. And we just get along, so it's like age doesn't matter when you get older. I don't know, what do you reckon?

Wendy: I think age difference does become less of a thing as you get older. I think that's true.

You know, age, not always, but in some ways, particularly in terms of disability, is quite equalising. Well, because I think as you get older, not everybody, but quite often, things that you experience as a disabled person starts to appear more as you get older. And so therefore, functionally speaking, the age thing disappears.

Sally: That's interesting you're right, I think. Yeah.

Wendy: To be honest, throughout all my life I've probably hung out more with older people, then younger people, even people my age. Like through school I spent more time with teacher aids than students.

Sally: Actually I think I did too.

Wendy: Going to university, t was the same, like I was either by myself or with a lecturer or tutor. I very rarely hung out with peers. And leaving university, I went intentionally through most of the consumer groups through Blind Foundation at the time because I wanted to connect with the community to see what I can do, to see what other people are doing, and they tended to be older. I was in my 20s, and most people were in their 60s, 80s.

Sally: But then the deaf blindness and disabilities part of it usually comes on with older age , s most of the population is going to be older than us.

Wendy: That's true. I think that's also part of it. The deafblindness, complex health issues, probably set me more in that older age. I kind of functionally fit in better there. Like I understood their problems, they were willing to talk to me. I have more of the similar limitations, more like I understand what it means to be going to hospitals all the time. Like, I think they found that I have more in common.

Sally: When I first met you, I think that helped me.

Wendy: In what way?

Sally: We’ve been friends for about six or seven maybe more years. I don't know, I can't remember. Oh, more than six, I know that. Anyway, I didn't know anyone else. I was working as an academic and I didn't know anyone else who was blind and partially deaf, who was also an academia, at the time. I know a couple now, if you count me and you, I think in a way when I first met you I think that it made me think more that I can be more open in a way. Yours has been less progressive than mine, mine's quite progressive, whereas yours has been fluctuating.

Wendy: Mine’s more fluctuating.

Sally: But at the same level so I could see the similarities, but I could also see the differences and it made me think, well actually, yeah there’s things the same, but I'm going to have to carve out my own path, aren't I?

Wendy: I think it doesn't have to be anybody who has professional standing or who's out there doing stuff. Just everyday people that you meet, sometimes they don't even have to talk to you. Sometimes you just become aware of what they're doing, how they're doing it, and that just gives you a perspective on… like, it's a different way of operating, I guess, eh?

Sally: Yeah.

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