Results of Focus Groups

Eight themes emerged from across the focus groups, based on the participants’ discussions. These included: (a) The Meaning of Disability, (b) The Meaning of Aging, (c) Aging and Sense of Identity, (d) Views of Successful Aging, (e) Societal Views of Disability and Aging, (f) Policy Changes Needed, (g) Positive Ways of Coping With Disability and Aging, and (h) Compassion and Acceptance. In addition, there were subthemes to describe each group’s particular experiences and ideas. Included are selected quotes that I drew on for my reflections of the participants’ expressions. One participant, Henry was interviewed individually because he could not attend a focus group due to not feeling well.

The Meaning of Disability

The participants shared their thoughts on what disability is, and what it means to them.

Focus Group 1

Activity Limitations and Accommodations. The participants talked about how disability can be an activity limitation, and they discussed the importance of accommodations for disabled people. Gloria stated that disability is a condition that makes it more difficult to engage in activities and interact with others:

It’s impairment that makes it more difficult for the person with the condition to do

certain activities and interact with the world around them. It makes it harder to

interact with other people … an activity limitation and participation restriction, that’s

what disability means to me. What it is to me is a medical term that lets people

know that we may need a bit more support, accommodations in life than other

people that don’t have disabilities … That’s what it means to me.

Similarly, Aubrey said that disability is a physical challenge:

To me, it means a physical challenge. I mean, it could be a mental one too, but

more often it’s probably a physical challenge that limits you from certain daily

activities and functions more so than other people. It kind of makes you feel

different or separate from other people. It’s definitely a difficulty that has to be

overcome as best as one can overcome it. And a person maybe has special

needs. They need maybe, special accommodations of some sort, a little more time

to get prepared in the morning, let’s say, maybe at work they need special

accommodations, and that could get quite embarrassing at times.

John also described what disability means to him, and said that he has to advocate for himself:

It means when I go places, I have to call in advance and make sure that they have

the right type of facilities and equipment to support me. And I have to make sure to

double check that they have the equipment and that I get a special room, like,

when I stay at a hotel. It pretty much helps with my situation that they have the

right types of lifts and things like that so that I don't get stuck without being able to

move around. So, making sure that when I’m taken around, that they have

handicap related facilities.

He went on to describe his definition of disability:

Well, I would say the definition—I’m going to go with, I'm going to say that it could

be anything that's either your body or your mind, whatever. Any kind of impairment

that really makes it more difficult for you to do different things. So, it could be

anything that limits your activity and prevents you from interacting with the world

around you, any kind of participation restrictions.

Difficulties and Fears Related to Disability and Aging. The participants talked about the difficulties that they experience with disability, and they also stated that they have fears of medical procedures as they age. Aubrey stated that she wishes she did not have a disability:

You wish you didn’t have it (laughs). You know, you wish you could be more normal

like other people. I mean, maybe other people have other kinds of disabilities. But

you wish a lot of times you didn't have it. It's kind of like a pain in your side

(laughs).

Gloria related to this: “Yes, it is, it’s painful. I just don’t feel normal sometimes.”

Focus Group 2

Activity Limitations, Compensating, and Coping. The participants described the meaning of disability as being related to having activity limitations and having to cope with or compensate for these limitations. Michael talked about what disability means to him:

To me, a disability is something that sort of disconnects with what is totally normal,

what you assume should just be, but you’re not quite whole. There’s something

either missing from you or there is something that is not functioning the way you

expect it to be. So that would put you on a little bit, I don't know, like a lower level

than somebody, maybe, that doesn’t have a disability. So, it makes you have to

work a little harder to compensate for that.

Brian added to Michael’s comments:

Yeah, I would say disability is something that does not function normally as other

people. And you identify that and … What does it mean to me? Basically, it's just

something to figure out how to cope with. So that's what disability is and that's

what it means to me. You’ve just got to cope with it, whatever it is.

Annika related to Michael’s and Brian’s definitions:

The same, I agree. It's something that does not function right and has a problem,

like a different type of disability, like a learning disability, or, you know, some

movement, unable to move properly. So, it's something wrong with your body or

your mind.

Focus Group 3

Activity Limitations and Knowing Oneself. The participants described disability as an activity limitation, but also discussed the importance of receiving help and knowing themselves. Sophia talked about what disability means to her and said it involves challenges, but also that there is more assistance available today than there used to be:

I would say disability, it could be something, like, people who have some

challenges. It could be mental or physical, or it could be in your mind. And with the

Disability Act, there’s a lot of help out there now. So, for me, I feel that it’s different

than it was years ago. So, I think nowadays there’s more assistance and it’s more

known to the public, to get jobs and to do more things. That's my opinion, yes.

Beverly agreed with Sophia’s comments, and said that what disability means to her is knowing herself well and finding ways to keep going:

There are challenges that so-called normal people don’t have, that people with

disabilities have to find a way around, better coping and having to overcome, and it

for me has always meant finding ways to keep going with challenges other people

don’t have. Allowing extra time to get places, just knowing myself enough to know

how I can keep going and accommodate my disability. So, that’s what it means to

me. Yeah.

Patrick added that he thinks of disability as something that hinders physical well-being:

It depends. There can be any type of different disabilities. There can be physical

disabilities and also, I don't know what they call that … But what I’m most familiar

with is physical disability, a disability that has hindered your physical well‑being,

maybe hands, eyes, ears, or legs. Yeah, I think that’s it.

Henry

Disability As a Disadvantage in Society. Henry talked about how he defines disability, and what disability means to him personally. He stated that disability involves the difficulty of him having to try to meet others’ expectations when they are incompatible with his abilities, making it more difficult to take care of himself: “Trying to cope with your limitations as opposed to the expectations of whatever you’re challenged by or going to engage in, and finding it’s a daunting task.” Henry’s description is an example of how societal expectations of achievement can make things more difficult for disabled people (Davis, 2006).

Gloria and Aubrey's statements of disability as a difficulty and how it can be embarrassing to ask for accommodations reveals the need for society to be more accommodating to disabled people (Langtree, 2010). John and Beverly’s descriptions of advocating for and knowing themselves show the value of gaining expertise and strength from the experience of being disabled in a society where disabled people often experience stigma and discrimination (Smart, 2009).

The Meaning of Aging

Focus Group 1

Aging and Changes in the Body and Mind. The participants discussed how the body and mind can change with age. Gloria stated that aging means the body gets weaker, and talked about her hearing impairment getting worse as she ages:

Aging means to me—it’s the process of growing old. It means getting older to

become elderly. You know, it’s just the process of growing old. And when you’re

growing old, your body becomes weak. Sometimes your body becomes weak.

Things get worse, like your eyesight. Things begin to shut down—your lips start

to change and fade. And blindness, hearing loss get worse. I know my hearing

problem, as I get older, it gets worse. I’d say, like, 10 years ago I used to wear

one hearing aid, now I have to wear two. So, it’s getting worse as I get older. So,

that’s what aging is to me, like, this thing is just getting worse.

Aubrey said that she feels negative about aging, and her disability gets worse. In addition, John said what aging means to him:

Aging is pretty much getting physically, biologically older, and what it means is

that I’m going to have a harder time not only with my body but my mind because

our minds get a lot slower when we age. So, that's the problem. It only

compounds the problem and makes it a lot worse.

He talked about how difficulties a disabled person may already have can make those difficulties even worse: “Well, yes, because now you’re dealing not only with physical aging but also mental aging. Aubrey added to this: “And having more problems. More problems form that maybe were never there before with aging. It’s not fun! (laughs). At least for me personally, it’s so not fun (laughs).” Gloria agreed: “Not fun.” However, Aubrey and Gloria also said that wisdom is a positive aspect of aging.

Focus Group 2

Changes in Physical Appearance and Deterioration of the Body with Aging. The group discussed what aging means to them such as changes in physical appearance and deterioration of the body. Michael described what aging means to him:

Aging is when you look in the mirror and you go, “Who the hell is that?!”

(everyone laughs). It means well, things have changed in your body. Uh,

mentally, I don't think so. Mentally, I think even as we get older, in most cases

that I’ve seen, we’re the same person. But we have now some physical changes

that don't allow us to do the things we used to do. We have to work a little harder

at things. And again, I look in the mirror and I go, “Wow, this is not the way I used

to be.” It's like my brother would every so often find these old pictures, and he

would e‑mail them to me, and I would look at them and go, “Who the hell is

that?!” And like, he would have to go, “Idiot, that's you! Don't you remember?!”

And I’d go, “Wow,” you know. “I don't even recognize myself from, like, 50 years

ago. It's like it's almost a different person.” And sometimes that's part of aging,

you seem to be almost like another person. Physically, if not mentally.

Brian also talked about what aging means to him:

Yeah, basically aging is scientifically when the telomeres in your DNA start to

wither down. But, you know, it's basically the skin maturing and decaying, slowly.

And, so what it means to me is we’re getting closer to death, basically pretty

much dying every day without even knowing it. But it's kind of like a fact. And it's

just a real, real slow death. So yeah, that's the way I look at it. I mean, it's

something that I try to prevent, especially the aging part. I put cocoa butter

on my face every night, and there's probably something more advanced that I

could use that helps. Any wrinkle that tries to show up, it helps smooth out skin a

little better.

Annika also described what aging means to her:

Okay, I think the aging, it's just the process of becoming older. It's not necessarily

to go to death, but just, you know, it's getting older. Your skin changes, your face

changes. And it’s not just the face. It can start at an early age, if you’re, like, 30,

35. It's awful.

Annika’s reflection of the changes in physical appearance shows how losses or changes can be difficult as people age (Chonody & Teater, 2016).

Focus Group 3

Aging as Challenges and Wisdom. The participants talked about how aging involves challenges but also increased wisdom. Sophia described what aging means to her, and stated that aging can be challenging because of stigma; however, aging can also be a subjective experience:

Oh, yeah, so to me, similar to the disability, it can be challenging because you

know, a lot of people—there’s still stigma, like for jobs or going places. So, I feel

like also even now the aging is different, it’s more acceptable. People go to work

now later in life, and I feel that it’s definitely—it could be a challenge, especially if

you have a physical ailment or mental ailment. And I would say it’s in the mind.

You could be aging at 40, you could be aging at 30, or you could be aging at 50

to 80. So, it could be all in the mind, and you could be a young 50 or 80‑year old

or an old 20‑year old. The mind really plays a part in it. That’s my opinion.

Beverly added that aging can make it both harder and easier to cope with disability:

Aging to me has made my disabilities both harder and easier to deal with.

They’re harder to deal with because things like arthritis get worse when you age

anyway, but especially for me because I’ve had it my whole life. But it’s easier

because I understand myself better. I accept my disability more, and I’m not as

angry about it. So, it’s harder and then it’s getting a little worse with age. But it’s

easier in that as we grow older, I do think we tend to grow a little wiser, hopefully,

at least about acceptance, because you can’t change your disability a lot of

times.

Sophia agreed and commented on the importance of experience: “Because we have more experience, yes. Beverly said, “Right. Just surviving, right?” Sophia replied, “Mm‑hmm. My grandmother used to use that word ‘experience.’ And I always liked that word.” Beverly commented, “Yes. We have decades more experience than younger people. Yep.” Patrick added that aging to him means postretirement:

Well, what aging means to me is especially, is going into old age, you know,

growing older in life. Yeah. And what it means to me is that it is usually a time

of postretirement, and it is around where you look back on your life and are

proud of what you have achieved, if you worked hard and, yeah.

The group also talked about how society is ageist, there is often lack of respect of older people, and the cosmetic industry makes a lot of money off of people who try to look young.

Henry

Aging as Challenges and Wisdom. Henry also talked about what aging means to him, and like Beverly, stated that with aging, having a disability can make things both easier and more difficult: "Having a disability on an aging incline increases the ability and the challenge to perform and complete tasks." I asked him if he finds that that happens more as he's aging, and he said, "It's become an increasing question ... yes.

Sophia's stating that aging is subjective shows how chronological age does

not necessarily define how a person experiences aging (Dannefer &

Settersten, 2010). Also, Beverly, Sophia, and Patrick expressing the problems of living in an ageist society and how respect for older people is important highlights the growth of older people, and the need for more appreciation of their wisdom (Vitemb, 2018).

Aging and Sense of Identity

The participants talked about how aging has affected their sense of identity.

Focus Group 1

Changes in Abilities and Physical Appearance. The participants expressed how aging can affect their abilities and physical appearance. Gloria said that aging affects her sense of identity in that her hearing has gotten worse, and this makes it more difficult for her to interact with others:

Oh, well, aging has affected my identity … It’s just made things worse for me,

like my hearing problem. My hearing problem has gotten worse and then it

affects my speech. People come up to me and are like, “Oh, I know you can’t

hear” because of the way I talk. I’ve got to wear the two hearing aids, and

those things are part of my identity, and just by going deaf, it's affected me.

And then it hinders me from interacting with other people, I stay to myself. I

don't like going out and mingling with people now, it makes me feel alone.

Before I used to be everywhere mingling and talking to people. But

that's how it's affected my identity, it hinders me tremendously.

Aubrey related to Gloria’s experience in that she does not socialize as much as she gets older. She also said that she is unhappy with how her physical appearance has changed:

I also do not socialize as much as I used to. I don't go out as much as I used

to … I totally can relate to what you are saying with that. For me, I would say

mainly it's my appearance. My appearance looks different, and I don't like it

and I don't like identifying with my appearance now. I want to, you know

(laughs), identify with how I looked when I was 20 or 30. Maybe this is vain of

me to be saying, but it's hard for me when I look in the mirror to realize, “Oh

my gosh, I look like this now?!” And I'm very fortunate I don't have a lot of

wrinkles because I have oily skin. But still, I see I'm looking different, and I

identify with that. I don't like it.

Gloria commented that, “Yeah, my lips went down tremendously. I don’t like talking on the phone anymore. So, I’m just—I don’t like talking to people, I text. I don’t want to be bothered (laughs).” She also described how she gets tired more easily as she ages.

Focus Group 2

Societal Perceptions of Aging. The group expressed how they feel about their identities in relation to how others may perceive them. Brian talked about how aging has made him feel more self-conscious:

Yeah, for me, it’s made me feel more self-conscious, just knowing how I

thought about older people when I was younger, and then wondering if they’re

thinking that about me. You know, like, “He’s around these people 15 years

younger than him,” and I wonder if they kind of look at me, like, “What’s he

doing around us?” But, so basically it makes me more self‑conscious, I would

say, to the younger crowd of people.

However, Michael stated that he does not find aging negative, as people often see him as being wiser as he ages:

I don't find it, like, negative or anything. In fact, at work, sometimes they’ll look

at me more as like, the elder statesman. So, sometimes, they’ll be more apt to

ask me for advice and sort of tap into the wisdom of my experience. So, that

way, the aging is positive. Of course, then there are those like my grandkids

who will just go, “Oh, you’re just an old man,” and give me the negative part

because they’re just kids. But to most adults that I'm with, it's sort of, it’s

almost positive.

Annika added that she feels more mature as she ages, as others think of aging as strange:

Yeah. I can say that it’s getting more mature, for adults and for children. Like

our children say, “Oh, you’re already old” (laughs). They say, like, after 50

years old, the person gets older. And they think it's something strange for

them.

Michael commented about how older people are often perceived as being more delicate:

They perceive us as more delicate, all right? That we’re going to break easier,

we can't do the things physically that we used to be able to do. It's like my

daughter goes, “Oh, isn't that too much for you?” You know, “Don't do this,

don't do that. You might strain yourself. You might hurt yourself. You’re too old

for that.” Stuff like that, in a more physical aspect.

Focus Group 3

Changes in Opportunities with Aging. The participants discussed how they can experience barriers as they age, but also how they are wiser. Sophia talked about societal attitudes, and how aging affects her sense of identity in that it can be a barrier in her getting jobs she wants:

Yes … they want people to look a little younger. Or, like, because I do some

acting on the side, and if you don't fit the bill, they say, “Well, I have a

homeless acting job for you, or like a mother or grandmother type. But not the

young hot girl” (Beverly and Holly laugh). So, it definitely could be a barrier in

the job you want.

Beverly agreed with Sophia’s comments, and also said that she feels wiser as she gets older though she still feels younger than she is:

Yeah, I agree. I tried to do some acting, too. I think that as we age, we do have

more to offer, but society perhaps thinks we have less to offer, especially as

women, maybe as men too … But I do feel like we have more experience,

wisdom, more dedication. We’re not flaky when we’re older like we are when

we’re younger sometimes. But for me, it’s harder to see myself as older

because I still feel younger than I am. That’s another problem (laughs), I feel

younger than I look now.

Patrick related to Beverly’s comments, and stated that while he wishes he was still young, he thinks people should have more respect for older people’s knowledge:

Yeah. Well, me I think I might envy young people right now. People tell me I

look younger than I am, so, I usually believe them. But I don’t know if it was

because when I was young, I avoided drugs, you know, I just led a life. So, but

I think being older, people should have more respect for people who are older

than them because they have more experience, they have more to say. Even

when my grandkids visit me, I usually tell them stories. I think that they like me

a lot. Yeah, so I am happy for them, and I wish I could be young again.

Sense of Identity and Negative Reactions of Society. The participants described the negative attitudes of society and how this could affect their sense of identity. Sophia talked about people’s negative reactions to older people and insulting things that they say to them:

Yeah, and people say the things that, you know, could be bothersome. Like,

they say, “Oh, well, you must have looked good when you were 20.” Or, like, if

you’re overweight, “Oh, you would be so pretty if you lost 100 pounds.”

Beverly commented on these examples of microaggressions, “Oh! Like, how insulting, yeah.” Sophia said, “Yeah, it’s like a backhanded compliment, you know." Beverly stated, “Yeah, yeah, so unfortunate.” She went on to talk about how society does not appreciate what older disabled people have to offer:

Yeah. Yeah. Our society is just so youth-oriented. You know, I don't think it’s as

much that way in some European countries or some Asian countries. But here,

Hollywood makes it worse of course. It’s all about staying young and not

caring about all the surviving we've done, because we’ve done a lot of

surviving. When you have a disability, you have to work harder to survive than

people who don’t have disabilities.

Patrick stated that it’s both disability and aging that people respond negatively to:

I think it’s even worse when you have a disability because people see you as

an extra burden. So, really about saying that if you are older and experienced,

I don't think it works here. It’s just different, people think otherwise. Yeah.

Beverly and Patrick also said that they are often misunderstood because people are not aware that they have hidden impairments and that they have difficulties.

Henry

Aging is Another Disability. Henry talked about how aging can affect his sense of identity by becoming another disability: “Aging impacts your best abilities by slowing them down and becoming increase—aging becomes another disability.” I asked him if he thinks people perceive him differently for being both disabled and aging. He said, “I’ve been put into bad categories because of it that I normally might have passed.” This is an example of how society often views older disabled people in a negative way (Grenier, 2005). He also stated that he realizes his difficulties and that he has to allow himself more time to do things: “I used to be a faster runner, I could comprehend things mentally quicker. I now know I have to allow more time for thinking and completing.”

Patrick and Henry’s statements show the negative effects of intersectionalities of oppression on a person’s sense of identity as they are aging (Jeppsson-Grassman & Whitaker, 2013).

Views of Successful Aging

Focus Group 1

Embracing Aging and Having a Good Quality of Life. The participants talked about the importance of continuing to enjoy life with the aging process. John described his view of successful aging: “To be able to continue to do what I do and have the same quality of life.” Gloria agreed with John’s comment, and added the importance of embracing being older:

I agree with him. That makes so much sense, I like that … Allowing myself to age

and just embrace it is successful. And to apply it in my life, I am embracing myself

to become elderly with grace. There’s nothing you can do but embrace it. What can

you do? Embrace it. Gain more wisdom, make more memories. And try to do

better, like eating healthier, exercising, those are things that can help with

successful aging. Just because you’re getting old that doesn’t mean you're dead,

like you’ve got to give up. So, I’m thinking about doing things that keep me up, by

exercising, eating better … those are the things I’m doing to age successfully.

However, Aubrey talked about the difficulty that she has with the concept of successful aging:

This is tough for me because (laughs) I don't want to age successfully. I don't view

aging as being a success but as Gloria mentioned, you really have no choice, you

have to accept it whether you like it or not. Right? For me, basically it would be to

leave a legacy of the people in your life or the people you work with. Leave a

legacy of yourself. Make a contribution of yourself and your talents, your

contributions. For me personally, I work with children, no surprise there, because

they keep me young. I swim with the dolphins and the whales, no surprise there,

they keep me young … so, continue to surround yourself with things in your life

that you enjoy, that keep you young. Listen to music, dance, things that uplift you

to help you stay young … Meditation, that’s very, very good as well. Gloria, you

mentioned eating healthy. Yes, taking care of your body, being good to your body

so you don’t get sick, hopefully. These are the best things that I think you can do to

“successfully age” in quotes.

Aubrey’s comments relate to how it can be healthy to engage in enjoyable activities when one is aging (Moore, 2017). Gloria also talked about how it is a problem that some people do not embrace getting older and have plastic surgery, and she said that her mother, who is in her 80s and has gray hair, looks good because she embraces aging.

Focus Group 2

Maintaining Health with Age. The group discussed their views of successful aging related to maintaining their health. Michael stated that to him, successful aging involves accepting the way things are and doing the best one can to stay healthy:

Successful aging is basically, to me, just accepting the way things are, accepting

whatever limitations that you do have, working around them, and just trying to do

the best you can, mentally and physically, keeping your mind as sharp as possible.

Keeping your body as healthy as possible, that's successful aging. And again, just

doing the best you can, so you keep going as strong as possible. And not letting,

not getting depressed about it; accepting the way it is, and just working through it.

Annika added: “I can say that successful aging is to stay healthy and be in good shape, even when you are getting older.” Brian stated that aging is a game:

Yeah, I would say as long as you’re looking 5, 10, 15 years younger than your

current age and you have strangers … you’re 50 and you’ve got people telling you

you’re probably 42, 43ish, then you’re probably doing something right. So, that's a

good way to deal with it, play the game. Look at it as a game. Try to look as young

as possible, on the inside and outside. That's what I do.

I asked the participants if they thought that successful aging looks different for disabled people. Brian stated that aging is scarier for disabled people:

Yeah, I think it’s scarier. I think with a disability, looking at the features and every

year, every day, every month, every quarter, it's like a little scarier. Because if you

have some kind of hearing impairment, then you’re thinking maybe it's going to get

worse as you get older because cells are dying and they can't be replicated like

they were when you were younger. So, I look at it as a little bit of fear in this.

Michael agreed with Brian’s comments: “Yeah, you have to work harder to maintain yourself. You have to put a little more effort into it when you’re older.”

Focus Group 3

Quality of Life and Community Involvement. The participants talked about the value of having a good quality of life and community involvement with aging. Sophia said that she thinks successful aging involves staying active and being involved in the community:

Well, I would say, like, a good quality of life. Have a good support system, like,

family and friends, that helps … I want to be active and outgoing, and have a good

family, structured life, where I'm busy and have a structure, where I could do

things, like positive, be a positive role model.

Sophia’s description is an example of how it can be beneficial to be active in one’s community when aging (Sellon, 2018). Patrick also said that he thinks successful aging involves having a good social life and support system.

Adjusting to Aging. Beverly added the importance of acceptance and being realistic with aging:

I think part of it too is just about acceptance as we’re aging, because when we

age, we are going to have less functioning, and we’re probably going to have more

pain and discomfort. Instead of saying, “I want to be young again,” or “I’m angry

that I can't function like I used to. I'm angry that I have more discomfort.” I guess

it’s just, for me, it’s more about accepting that it’s going to happen and trying to

adjust. That's it.

Henry

Awareness of Abilities. Henry talked about his view of successful aging, how this applies to him, and the importance of awareness of abilities and limitations: "Successful aging in knowing your limits, both negatively and positively, and how you can or can't function."

Sophia and Patrick's stating that successful aging is to have a good support system and quality of life, highlights the benefits of well-being as one ages (Greenfield & Marks, 2007).

Societal Views of Disability and Aging

The participants discussed how they thought society views disabled people who are aging.

Focus Group 1

Lack of Support of Older Disabled People. The group described how society does not support older disabled people the way that it should. Gloria talked about how society views disabled people who are aging:

Oh God, terrible. Just terrible. I see how my dad—my dad is hard of hearing, he

can barely walk, he can hardly see. He let himself get diabetic, though because,

not to be talking about my father’s business, but he was on drugs for a long time,

so it really affected him as he aged. And the people around him treat him terrible,

no respect. He just goes through a lot. They don’t want to speak up. Oh, wow,

when he’s talking to people on the phone, I literally have to call customer service to

help my father when he’s dealing with like, a bill. He can’t hear them, so they’ll be

getting over on him and making him pay more money than he’s supposed to. My

dad is going through a lot. I go through some things, too. But my father, he’s

considered elderly, society is not kind to him, and he wasn’t kind to himself, either.

And he can’t get around. He lives in (city he lives in). So, there’s no places for him,

where people come and take him to his doctors’ appointments. They should have

stuff for the elderly. Where is the help at? Yeah. It’s hard.

Gloria’s description is an example of how society views disability and aging as negative (Oldman, 2002). Aubrey also shared her thoughts on how society does not embrace older disabled people:

Yes, society definitely does not embrace aging or the elderly at all. It’s all about the

youth and looking good. And you know, there’s not enough accommodations for

disabled people, people with physical challenges … people are not patient, and

they do not understand enough. I remember, I used to volunteer at an elderly

home, and one of the common things for the people there is they were just happy

to get the attention. And they would tell you about their lives and their children and

their families, and they just wanted someone to talk to, these elderly people that

were there.

Gloria talked about her fears of getting older and not having anyone to take care of her because she does not have children, as she did not want them to be hard of hearing also. John related to Gloria about not wanting to pass down a disability to a child:

That’s the same way I feel about it too, you know, passing it on. It’s not right

because, like, my problem with walking is, it’s very torturous. It’s just pretty much a

living hell. I’m just getting by, day by day.

Aubrey also stated that she does not have children, and talked about how older people are often taken advantage of:

Interesting. I don’t have children either. Very interesting how all of us don’t have

children. And also, the elderly are taken advantage of mentally. A lot of these

scammers are out there, to get money and what have you. They always target the

elderly people, or like, people with Alzheimer’s. They’re victims a lot because of

their mental faculties.

Intersectionalities of Oppression. The group members described how society views them with their different identities, and how they are treated because of it. John talked about how he thinks society sees older disabled people as a double minority:

Yeah, I think they see them as being, like, a double minority. Because first, you’re a

minority with a disability. And then when you’re aging and you become elderly,

you’re in another class. You’re a senior citizen and you need more help then. And

at some point, if you lose your mental faculties you become like a kid, you can’t

even think straight. So, you feel like you are being viewed as a double minority.

Also, Gloria stated that she is treated differently by her nieces and nephews as she gets older because her hearing difficulties are not convenient for them:

Oh, I have nieces and nephews. And they don't call me, they do not talk to me. I

think they see my disability and maybe my age. I think they see that and it just

turns them off. They used to be around me a lot when we were growing up, when I

was younger. But now that my hearing has gotten worse, they don't come around.

They don’t call because they’ve got to constantly repeat themselves. I can text

sometimes, but I think that’s sad to treat somebody like that … I feel like if I didn't

have this severe hearing impairment, they wouldn't mind my age because they go

around my mom, she doesn't have a hearing problem. They go around my

brothers, who are a little older than me. They go around their uncles, but they don't

come around me too often because I can't hear, and that hurts my feelings.

Focus Group 2

Respect of Older Disabled People. The group discussed how older disabled people are often treated with respect because of their wisdom. Brian talked about how people look at disability and aging in a respectful way:

They look at it as respect, they respect you more. And they can laugh about it, they

can say you’re getting old and everything, but at the end of the day, that's a

success because you’re achieving something that most people don't achieve.

Some people die early, so a lot of people look at it as respect. They’ll open the

door for you, they’ll show respect, that's what I see. Younger people will show more

respect.

Michael agreed with Brian’s comments, but also said that there are some exceptions:

Yes, in general, I’d agree with that. Of course, you do get exceptions, you know,

who will sort of, treat you with a little disrespect if you’re older. But those are

usually people who you don't know, just strangers, really it doesn't matter to you.

But people who you do know, I would say, yeah, they do usually treat you with

more respect. You have survived, you have experience, and they do respect that.

Annika agreed with Michael: “I totally agree with this.” I asked her if she thought that people treat disabled people who are older with more respect. She said: “It depends on the person. Some, yes, some, no.” I asked her why people would not respect an older disabled person. She stated that it could depend on the person’s attitude: “Because it probably depends on how they age … it is social … it depends on the personality of this person.” Michael agreed with this, and stated that if an older disabled person has a positive attitude, others will look at them more positively:

Agreed. If the person has a good attitude, I think people will respect them more. If

the person is miserable and depressed in their actions, then I think people will

either respect them less or just pity them. But a good attitude will bring out a better

attitude from other people.

Annika added that people’s attitudes can have to do with how they were raised to think about disability and aging: “Also, maybe from the family as well, how they’re raised.” Annika's comment shows how family beliefs can affect attitudes (Munyi, 2012). Brian also said that some people like to ridicule older disabled people to blow off steam.

Attitudes in the Workplace. The participants also described how people view them in their workplaces. Brian described examples of how coworkers treat him differently by passing him up for job opportunities:

Well, I would say coworkers treat you different and … like I've seen on a job that I

get passed up for opportunities because I'm getting older, and they give it to like a

young, fresh out of college, 21‑year‑old, 23‑year‑old, if it's grad school. So, I get

treated different like that sometimes. I'm not saying this—it may be my

performance, too, but I'm just saying I know across the board, I hear it from other

people that, “He was older,” and so that's one way.

I asked him if he thought it was because of his disability or age or both of those things, and he said that it is a combination of both: “Both. But ranking, either 1 or, from 1 to 2, I would say, it’s disability, then age. Yes.” I asked the other group members if they have had similar experiences. Michael stated that aging has not affected his professional life:

I haven't found that my aging has affected my professional life at all, luckily. But I

guess it depends on the type of job you have. So, in my situation, it’s like a health

professional. Aging, in most cases, is not a major problem. All right? In terms of

disability, you just work harder to work around it. But the aging itself was not an

issue for me.

Annika also said that she thinks people like the work she does: “I'm a tutor for my language, and I think people like my work.”

Issues with Relationships. The participants also talked about romantic relationships and how people may react to older disabled people in dating situations. Brian stated the importance of a person being honest about their disability in relationships. Brian and Michael also said that in dating relationships, older disabled women may be valued more than older disabled men as disabled men may not have accumulated as much wealth as nondisabled men, due to being disadvantaged.

Focus Group 3

Stigma Towards Older Disabled People. The participants discussed what they thought societal attitudes towards disability and age are, and the changes in attitudes and actions that are needed. Sophia talked about stigma, and also the benefits and improvements in treatment of older people:

I would say, like we said before, the stigma. But one good thing is that they have a

silver sneaker program where you get discounts for exercise. And they have AARP,

where there’s a lot of good incentives to that, and half price Sundays for the

movies because I'm a movie buff. So, there are more things, as I think society is

getting—the baby boomers, everybody is growing older now because of the

healthy lifestyle and hopefully the clean air we breathe, and the social life. So,

fitness is becoming better now with aging. So, I feel that there are some

improvements, but of course it could be better. That's my opinion.

Beverly commented about treatment of older people:

Yeah, because baby boomers are aging in large numbers, they’re going to have to

accommodate us, right? So, but because I don't feel as old as I am, I feel like I'm

shocked sometimes when people treat me with less respect or call me old lady, like

I've been called, you know. So, I'm disappointed and shocked (laughs). People

treat me old. But I think a lot of it is up to us to maintain a young attitude as much

as possible.

Patrick talked about how older disabled people are disadvantaged:

Yeah. I think that people who are aging and disabled are a little disadvantaged

compared to the people who are aging normally. So, I’d say that society is harder

on us than normal aging people. But I’ve got to say with people with disability, we

have to adjust and maybe try to be close to people who care about us. And, yeah,

try to adjust and take life easy.

Beverly agreed with Patrick and said:

Yeah. Society isn't always kind to us. I mean, society sometimes, I think, sees the

aging as a burden, and that people who are older are going to be a burden to

society. You know ... Yeah. Instead of acknowledging that maybe if we are a

burden, we worked for what, 40 years, we've paid in (laughs) to social security, we

paid taxes. So, we're not a burden, we've actually earned it. We've earned the care

that we're going to need, I feel.

Henry

Not Acknowledging the Value of Older Disabled People. Henry talked about how he thinks society views disabled people who are aging: “Society views disabled people on a plateau that doesn’t fully let the person be what they are, were, or can be. Although they claim there’s equality, there could be more.” Henry and Beverly’s statements show the stigma (Grenier, 2005) of older disabled people, and highlight the need for older disabled people to be treated with respect and support.

Policy Changes Needed

The participants talked about what they thought health care professionals should know about disability and aging, and what policy changes are needed.

Focus Group 1

The Importance of Knowledge of Disability and Aging. The participants discussed the importance of health care providers being knowledgeable about disability and aging and providing appropriate support. John stated that health care professionals should provide more support to older disabled people:

They should know that we need a care team developed that will help us out

with different issues. Like if I need to reach my ideal weight, they could help

me out with a dietician or nutritionist, things like that. Or if we need to quit

smoking or quit drinking, we should get support. So, we should have a big

care team.

Also, Aubrey said that doctors should take psychology classes:

I think they need to take psychology classes and understand the development

of aging. There's certain psychological stages of human development, and

they should also understand the physical development as well, rather than just

throwing medications at people and “take this pill” and “take that.”

Gloria agreed with Aubrey and John about doctors providing older disabled people with more support and understanding:

(Applauds) Good! Good! I agree with Aubrey and John. And they should think

about the people aging … they should care about the mental stress that we go

through with our disability. Having a disability is stressful, you know. They

should be more understanding about that as well, the mental part of it.

Gloria went on to say that doctors should be more accommodating and compassionate:

I think they should definitely be more accommodating. They’re not

accommodating at all, especially with people with hearing impairments, I've

noticed that. They should treat people that are aging with disability a little

better, like have some compassion. I just feel that they don't care. It’s gotten

worse. I feel like they need to talk to you and ask you questions about how

you’re feeling. They really need to dig deep and talk to you about these things.

Like Aubrey said, all they care about is, “Oh, okay, what's the matter? Okay,

I'm going to write you a prescription for that.” They don’t talk to you about how

you’re feeling or what's bothering you, what's hurting you. And then

sometimes, if they do ask you questions, they tell you they’ll write up a

prescription, and that's not right. So, they need to really talk to us, do

more talking and listening and trying to help, than writing us off and giving us a

prescription for everything, for every little thing. That’s how I feel.

Gloria stated the importance of doctors being more understanding of her experiences related to the social and mental difficulties of disability and aging, and said that these experiences can be depressing: “Yeah … that stuff makes me depressed, like, that's depressing to me.”

The Importance of Support Groups and Services. The group talked about the value of support groups for disabled people and having people who understand what other disabled people are going through. Aubrey added the importance of support groups for knowing that other people also have difficulties: “Yes, and that you’re not alone and that you’re not the only one. I think it’s very, very important to connect with other people that have the same disabilities as each of us do, to help us to cope.” Gloria and John also talked about the need for a dating site for disabled people. Gloria expressed her concerns about not receiving information about support when she goes to court or captioning in movie theaters. She said more about how disabled people do not get a lot of support:

Yeah, see, that’s another thing. I don’t feel like we have a lot of support

representatives. You know how the gay people, they have a lot of support,

like, if you say anything bad about them or you do anything, they have a whole

bunch of support. I feel like us disabled people don't have that type of support

if something goes wrong or somebody says something bad or something

happens to us. We need more people that represent us.

Gloria's comments reveal the need for more access and information about services and resources available to disabled people (Frank, 2000).

Focus Group 2

The Importance of Knowledge of Disability and Aging. The participants talked about what health care professionals and policy makers should know about disability and aging. Michael stated: “Well, they have to be more understanding and realize that sometimes aging can exacerbate the disability and make it more difficult, and they have to work with that.” Annika said that doctors need to individualize treatment more and not assume everyone needs the same thing:

I think they have to personalize it more, like, a more individual approach to the

patient and give specific recommendations on how to improve your condition.

And so, they should be more careful not to treat everybody like they are the

same person. So, they should be more personalized.

Annika’s statement reveals the value of doctors having an understanding of the health issues that older disabled people may experience (Stone, 2007), and meeting the individual needs of consumers.

Discounts and Better Access for Older Disabled People. I asked the participants what policy changes are needed regarding disability and aging, and they stated that there is a need for more discounts. Brian talked about the importance of discounts for older disabled people and better access to transportation. However, Michael talked about how he thinks that society is moving in the right direction with policy changes. Annika added that it is important to provide older disabled people with more discounts because they might have a lower income than nondisabled people:

I think they have to provide more benefits for people this age and who are

disabled. Some, like, discounts for the city because people who are disabled

and aging, sometimes they aren’t able to pay a lot. They need some—they

have a lower income than other people.

Focus Group 3

The Importance of Knowledge of Disability and Aging. The group discussed the importance of knowledge of the needs of older disabled people, and more services being available. Sophia stated what she thought health care professionals and policy makers should know about disability and aging, including that everyone has different needs:

I feel that they should know about all, like, osteoporosis, mental health, things

that come with the aging, diabetes, eating healthy. And everybody is not a one

size fits all. Everybody is different, you know. So, like I said before, you can

have a mind of a 20‑year old or an 80‑year old, it depends on who you are

individually. And even sex life, that’s taboo, because I take a lot of health

classes on that and STD's. And people think just because you look a certain

way … it doesn't mean you have a sex life. So, definitely everything from

mental health to physical health, and everything in between. They should

know everybody is different.

Beverly agreed with Sophia that everyone is different, and she also said that it is important to provide more services to older disabled people:

That's good. Yeah. I think policy makers in the public at large, like Sophia said,

have to realize we're all different. However, that said, I think there has to be a

lot more investment in services for the elderly, because right now, there’s not

enough services especially for the elderly with disabilities. I mean if you’re

very wealthy, you will get help or if you’re very poor, you can get help. But if

you’re in the middle, middle class, there’s not a lot of services for elderly

people with disabilities. They’re kind of left to fend for themselves. And I don't

have children so it is not like I can count on family. So, I think the government

might have to put a little more funding into services for the elderly, and especially

those with disabilities.

Patrick added that there is a need for policy makers to be fairer to older disabled people:

Yeah. I kind of agree with you there because I think that policy makers should be a

little more fair with old and disabled people. I mean, this is America, they should do

better. So, I think that they are not doing enough right now, honestly. And I'm

pissed off sometimes that that’s the way because I expected more from them. And

(sighs) well, I think that people, when you have money, I think you can do better for

yourself, but when you are financially limited you have no choice but to just take it

as it is. So, I expect them to do better. Yeah.

The Value of Support and Support Groups. The participants talked about the need for more support groups for older disabled people. Patrick stated that there are not many support groups for older disabled men. Also, Beverly said that more support groups are needed for people with low vision though as most support groups for people with visual impairments are for people who are completely blind.

Disability Studies in High School. Beverly talked about how it would be great to have a disability studies course in high school:

I almost think that they should have something in high school. You know, not

everybody gets to go to college. I think we should have a high school course about

disability, somewhere in the high school curriculum, because a lot of people are the

hidden disabled or the people that don't disclose it and struggle and suffer. But I

think if we all as a society had a little bit of education, maybe we’d be kinder to

each other.

Patrick agreed and stated that it is important for children to learn about disability:

I think I could agree with you on that. Our children just have to learn more about

disabilities considering that they are real disabilities, like the one you have. So, I

think they’ve got to learn about that and how they can help people like that.

Beverly added that disability studies classes in high school would teach young people to be compassionate, as classmates may treat disabled people unfairly:

Very good, yeah, it should be in high school, because I had some classmates who

had cerebral palsy, right, and muscular dystrophy. Everybody treated them kind of

strangely. We never had any education or any compassion or anything, our

teachers never really taught us what it was like to have a classmate with a

disability. So, it just seems like as a society, we could do better.

Patrick commented: “That’s really disappointing.” Beverly stated that she hopes changes in education will occur: “Yeah, it is. It is disappointing. And I don’t know if it’s going to change any time soon … Maybe we’ll have some more legislation to help disabled people … Hopefully, we’ll see.” These comments reveal the value of knowledge of disability in society (Reeve, 2014).

The Need for Adaptive Equipment. The group also talked about how adaptive equipment is helpful, but expensive. Sophia stated:

Yes, and everything is adaptive now, you know, like the cars. And if you have, like,

no arms or anything, you could just talk now to the car and it will go wherever you

want. So, everything is getting better with that.

Beverly commented on Sophia’s statement: “That’s true. But it’s all expensive, Sophia. That’s the problem. That’s the problem (laughs). Technology.” Sophia replied, “Yes, technology, right.”

Henry

The Need for Understanding and Support of Older Disabled People. Henry expressed what health care professionals and policy makers should know about disability and aging:

Well, health care people and policy makers should know that there’s more people

in the shadows and living lessor lives because of the disabilities, and the aging of

disabled people makes it more pronounced. And they, too could be one or both of

those, they could become.

Henry’s statement shows how changes are needed where the struggles of disabled people are understood and support is provided (Reeve, 2014).

Compassion and Acceptance

The participants shared ways that they practice self and other compassion and acceptance as they age.

Focus Group 1

Embracing Aging, Enjoying Life, and Valuing Wisdom. The participants talked about how they practice self and other compassion by embracing aging, enjoying themselves, and appreciating wisdom. Aubrey described how she practices compassion for herself by embracing the parts of herself that she likes and not giving up:

Basically, you have to accept it. You really have no choice (laughs), it is what it

is. And embrace the parts of you that you do like, your talents, your abilities,

your hobbies, your interests, your knowledge, your wisdom, your creativity and

imagination, things you’re good at, things you do best, things you enjoy. Do

those, focus on those. Meditate. That's at least how I personally cope. You

know, me being a Libra, I like to see the glass as being half full rather than half

empty. Now, I don’t always think that way, but I find that when I have periods

that I'm down or depressed, they don't last long, that's the good thing. I pick

myself up, brush myself off, and get back up on the horse sort of, to say. I

keep plugging along and trudging ahead. And once again, just focusing on the

things I do enjoy, that make me feel young, and getting in touch with my inner

child. That's my secret, you guys. You guys know my secret now! (laughs).

Gloria also shared how she practices compassion for herself by embracing aging and also appreciating the wisdom of older people:

I practice compassion toward myself by loving me, embracing aging, got to

embrace it, and loving myself, staying away from people that hurt me, and

trying to be more positive. I read self‑help books, I hang out with my dog, and I

hang out with the two people that I feel care about me. And my father,

sometimes talking to him can be frustrating, but I'm there for him. I take the

time to go visit him. And then when he is having problems with customer

service or any type of problem, I get on the phone and three-way or whatever,

to handle it for him. And that's me practicing compassion. And then when I see

other people that are disabled, I talk to them, I help them. If I see, like, an elderly

lady behind me with her groceries or whatever, I let her get in front of me. I love

talking to elderly people because they’ve got good wisdom! But I try to be positive

and just keep loving myself and enjoying the things that I love to do that give me

compassion for myself. And I love listening to music. And watching a good movie

is a good thing, something funny like comedy that lifts up my spirits. Those are the

things that I do, for compassion for myself and for other people.

Aubrey stated that she likes comedy also, and it can be healing. She also said that she respects older people. Gloria stated that she would want people to show her compassion when she gets to be elderly:

And I would want people to have the same compassion for me when I get to the

elderly stage. So, I would want that as well. Yeah. So, I treat them with a lot of

patience. I do have a lot of patience for them.

John also said that it is important to treat others the way he would like to be treated, and he practices compassion for himself by doing the best he can.

Gaining Support from Others. The group also discussed the value of getting social

support. Aubrey talked about the importance of a support system:

I just think to have the support system is probably key to help as people do age in

their lives, to have the companionship, to have a support system, to have a sense

of community of belonging. I think that that's key, not to be alone.

John agreed with Aubrey about the importance of a support system: “Yeah, you’re right because if you’re alone, you’re going to get depressed and you’re going to go in a downward spiral, and it’s just going to make the problem worse.” Gloria said that she desires more human companionship. She expressed that disabled people may get lonely, and she stressed the importance of having people to talk to that understand what they are going through:

Having a disability and being hard of hearing, you get lonely. It seems like you are

the only one that’s going through it. You know, so, it’s good to talk to other people

that have the same issues, that’re disabled as well.

Focus Group 2

Compassion and Acceptance of Self and Others. The participants talked about how they practice self and other compassion by accepting themselves and also having empathy for others. Brian described how he practices compassion for others by imagining being in their shoes and not judging them:

Just imagine if you were in their shoes, to have compassion for people, that’s

what I’ve seen. I remember when I was younger, I used to do the same thing, just

talking nonsense, stupid stuff, to people I didn't know. And so, I would just … you

just have to imagine it, what you would do if you were in their shoes before you

judge them or say something bad. So, that may help the person that you want to

judge or have revenge against or something like that.

He went on to say that he practices compassion for himself by forgiving himself: “Yeah, just forgiving myself. I guess that would be practicing self-compassion. Yeah.”

Michael talked about the importance of acceptance with aging:

Acceptance. You accept the way things are. And you just slice it, you work the

best you can to keep your faculties working properly, and to keep your body in the

best shape to just overcome your disability and the aging. But again, it's

acceptance, the way it is, and not letting it get you down, not getting depressed

about it.

Annika agreed with Michael’s statements about acceptance: “That's a good point, right? You have to accept it. It is what it is.” Michael added: “You may not like it, but it’s the way it is.” Michael also stated that it is important to not be hard on oneself: “Don’t beat yourself up. Accept your limitations. Do the best you can to overcome them, but accept your limitations.” He also talked about how he has compassion for other people by putting himself in other people’s shoes and treating them as humans:

Put yourself in their shoes, all right? Don’t look at them as like a freak. I think

that’s part of the problem, why some people look down on people with disabilities.

They look at them as something not quite fully human. And if you do that, then

you’re going to treat them as not quite fully human. So, you have to put yourself in

their situation, and go, “How would I want to be treated if I was like this?” You

have to empathize with them.

Focus Group 3

Appreciating Strengths and Helping Others. The participants described how they practice compassion for themselves and others by appreciating theirs and others’ strengths, and also being supportive to others. Sophia talked about how she practices self and other compassion by taking care of herself and giving back to others:

I guess I can, like, do volunteer work. You know, help out or give back to the

community. Or like I said, I'm getting into coaching now more. Take a couple of

classes that use a discount or I get scholarships, so that helps with that. And just

trying to give back to other people, or if they need my opinion, and with my

experience of what I did, I try to help other people.

Beverly agreed about the importance of helping others, but she stated that she sometimes finds it challenging to have compassion for others who do not take care of themselves:

Yeah. You know, I think too, the compassion, for me it’s a little harder, because I

see people who are a lot healthier than me who really don't work or they do a lot

of drugs or something to destroy their health. So, for me it’s harder to be

compassionate sometimes, and I should be because I’ve had to fight my whole

life to keep working and keep healthy. So, I’d like to be more compassionate to

others.

Beverly also described how she has compassion for herself by saying that she’s a survivor:

Compassion for self, the only way I can be compassionate (laughs) to myself is to

say I’m a survivor. I think all of us are survivors when we have disabilities, and we

just have to remember that we’ve come this far for a reason, and it’s partly

because of our own efforts.

Patrick also shared how he practices compassion for himself and others by using kindness:

For me, I usually think I would like to do for people what I would like to be done for

me. So, when I find I'm in a position, I think I can help someone who also needs

help. Like, maybe when I see some old man or woman needs help crossing,

somewhere, I think I can help when I can. I can say I try to be more kind to others

but people can also be kind to me. It sounds like something to be coming because

I've had some experiences where I just think karma has come and done

something from which I think I did for someone else that I really don't remember.

So, I try to do good for other people. Yeah.

Henry

Being True to Oneself. Similar to Michael and Annika, Henry talked about how he practices self-compassion by having acceptance and doing the best that he can. He said that it is important for him to be true to himself and not be forced to do things that are too difficult for him: “You really have to be within yourself to try to steer a path as you’re getting older, that allows you to not be abandoned or be a slave, or forced into doing things you can’t or won’t do because of your disability or your age.” Henry’s statement shows how a person can practice self-compassion by having self-acceptance and an understanding of their abilities and needs (Neff, 2003).

Positive Ways of Coping with Disability and Aging

The participants described positive ways that they cope with disability and aging.

Focus Group 1

Enjoying Life and Gaining Social Support. The participants expressed positive ways that they cope with disability and aging, but also how it can be challenging. Aubrey said that she tries not to think of herself as old, and she engages in uplifting activities:

Well, you guys are going to laugh, maybe (laughs). I try not to think of myself as

being old! (laughs). I guess that’s just the child in me, you know, dance, draw

pictures, be around the kids, the dolphins and whales when I can, listen to music.

Do things that, like I say once again, uplift me … get in touch with my inner child,

that's how I cope. I refuse to believe that I'm getting older and old and aging. I try

to enhance my looks when I'm going out or going around my friends, I dress very

nice, things like this. I work with what I've got. I just refuse to believe that I'm

getting old until I see the signs, like in my hair, and I go in the mirror and go, “Ahh!”

Like I scream, “Ahh!” (laughs). When I see the gray start to peer out, I get horrified

(laughs) ... And the eyebrows. The eyebrows starting to fade. This is like a recent

thing for me now and I'm like, ‘What is going on here?!’ (laughs).

Gloria commented on Aubrey's statements, and talked about what she does to increase her well-being as she ages:

(Laughs) Yeah. I would like to add a few things. Like Aubrey, I dye my hair because

that tells—I’m not going to lie, I dye my hair. And I play music in my home. Oh, I

have a dog. I have a dog that I walk constantly. He keeps me young because we’re

always walking, taking hikes, and stuff like that. And we walk the trails, so my dog

definitely keeps me on my toes and keeps me young. And then I have a few

people I interact with, and then sometimes we'll get together and we'll cook, we

play music and we laugh. They understand my hearing problem, they’re okay with

it. They don't treat me differently or whatever. So, I’ll go around those types of

people, and they like to play music and they like to dance, and we’ll hook up

sometimes and do that. And those are the things that keep me young and not

focusing on aging.

Aubrey stated: "Hey, I have a cat and she's like my child (laughs)," and Gloria said, "Yeah, my dog is like my child too! They make the best companions, don't they?" Aubrey agreed: "Oh, they do indeed. Indeed.

John also talked about how he deal with disability and getting older:

Well, the way I deal with it is, I pretty much try to build my support network for

others that help me out, like my brother. He lives nearby, and then also my uncle,

he lives nearby. My dad had passed away from cancer several years ago. But my

uncle, he’s retired so he lives a few blocks away, and he helps, too. And pretty

much the way I deal with it is through the others in my network. So, I build up the

network to a critical mass where I try to get as many people as I can that I can rely

on. I can't do things by myself, I need rides sometimes, whatever. So, I try to find

as many people as I can.

Ways of Coping with Losses. I asked the participants ways that they cope with losses as they age. John shared with the group how therapy helps him cope with losses:

Well, I have a counselor that I see. It's a psychotherapist. And we do, like, face to face talk therapy. The way I do it is, you know, I have, it's covered by my insurance,

and I go in and we do talk therapy.

Aubrey said that she has difficulty with change and it takes her a while to get over changes. Gloria talked about dealing with the loss of her nieces and nephews and feeling left out:

I don't have any kids and I just have nieces and nephews, and I feel bad that they

don't reach out to me. Like, we used to be close, and that change makes me feel

bad … I don't know. It’s just those types of things make me feel bad. I don’t like

changes, either. And so, I take it hard, I take losses hard. I feel like I lost my nieces

and nephews. I can't help the way I am. But a lot of people, I mean, some kids

nowadays … I mean they’re older, they’re adults. You’d think they should be more

understanding, but they’re selfish. I'm not the cool auntie anymore (laughs). But it

could be my fault because I am like, in my own world. It could be me, too. But I

don't take losses and changes well at all. Yeah. And like Aubrey said, it also takes

me a while to get over the losses (sighs). I think the point I'm trying to make is I

wish I had more people around me. Like I said, I think I have two people in my life

that get it, that understand me.

Aubrey commented: “They say all you need is one or two (laughs).” However, Gloria said that she wants her nieces and nephews in her life:

Yeah, but I want my nieces and nephews. I want to have a relationship with my

nieces and nephews, like, I really want that. I want to express it, but they get so

frustrated talking to me. They don't want to speak up. They just, it’s sad. It wasn't

always this way … but it’s part of just being disabled, I guess. So, I’ve just got to go

where the people love me (laughs), where the people appreciate me. That's how I

do it. That’s how I deal with it.

Gloria expressed her fears because of not having someone to check up on her as she ages:

That's, like, one of my worst fears. Like, what if something happens to me? Like,

I'm alone all the time. What if, God forbid I have a heart attack or something like

that? I don’t have anybody. Who is going to check up on me? I don’t have any

family like that around me … My family, my nieces and nephews, they’re all in their

own world or whatever. So, that's like one of my worst fears because I'm aging.

And then, anything could happen, so I think about those things, like, wow, what if?

Because some people that’re alone, sometimes they end up being found dead in

their homes. Yeah, they will be dead in their homes for a couple of weeks and

nobody knows. That’s like one of my worst fears. Because they didn't have anyone

to check on them. Yeah. I always try to tell my nieces and them that, they don't

care. Yeah, it happens, I read about it. And Oh God, it's scary, it is.

Aubrey agreed with Gloria’s statements: “Very, very scary.” Gloria talked about how being disabled can be isolating:

And that's what disability does to you … It's like, when you have a disability and

stuff it keeps people away or whatever. It just, like some people don't want to deal

with that, you know … You've got a few people that’re okay with it. But if it's your

own family they don't really want to deal with it.

The participants’ statements show the need for social support when aging with a disability (Walsh & LeRoy, 2004).

Examples of People Who are Helpful. The participants described experiences where nondisabled or disabled people are understanding and patient with them. Gloria shared how she has a few people in her life who are accommodating to her:

I have a teen cousin that likes to come around me sometimes, and he's very

helpful, and he looks at me when he talks to me, because some people, they’ll be

wandering off trying to talk (laughs). But he actually looks at my face and allows

me to read his lips when he talks to me. I love that about him. And when we're out

somewhere, and if we're at a restaurant and somebody is trying to say something

to me, he speaks up. He tells me what they’re trying to say or he'll talk for me …

And my two friends that I told you all about that I go around sometimes—one of

them, he’s alright (laughs) … there’s a couple of times people will be saying

something to me, and I’ll go, “What did they say?” He’s like, “I don’t know” (laughs).

He’s alright, but he needs some work. But the other one is pretty cool, he helps

me. He talks up and loud and clear. He allows me to read his lips, and he’s really

helpful. Yeah, so those are the things that nondisabled people do to help me.

She also said that there was a lady who worked at a restaurant who pulled her mask down so that Gloria could read her lips, which was helpful. John also described experiences of people helping him. He said: “Stable people, everyone who helps me is very stable. So, I'm very fortunate, yeah. I'm pretty much surrounded by stable people helping me.” I asked him if these people are disabled or nondisabled. He stated: “It's a mixture of both.” He talked about what stable means to him: “Stable means that they’re able to take care of themselves, they’re self‑reliant, and they don't need others to take care of them.”

Focus Group 2

Taking Care of Oneself in the Aging Process. The participants discussed ways that they take care of themselves and stay healthy as they are aging. Brian stated that he copes with disability and aging by gaining knowledge about reversing aging, and he enjoys sharing his knowledge with others. Also, Annika stated that there is a need for people to understand that they are getting older, but also not put themselves down:

You have to understand that you’re getting older. And so, you have to prepare

yourself, but in the same way, you shouldn’t put yourself down. You realize life is

changing, and you don't know how long you will live. It doesn't matter. You are

aging, but you can live longer.

Michael said that working on maintaining good health is important as one ages:

Yes. You have to get into an exercise routine. You've got to keep your muscles

toned. You want to do cardio because one of the biggest things with aging is loss

of muscle. And if you don't exercise, your muscles will deteriorate, you will become

more delicate. So, you do have to exercise on a routine basis. You have to eat

healthy, try to avoid junk foods. And organic, fine, if not, the healthiest alternatives

that you have access to. You want to keep on top of your doctor's appointments,

do your check‑ups. Basically, look at yourself as an old car. You need a lot of

maintenance. All right? And if you don't do that maintenance, the car’s going to fall

apart. Just because it doesn't hurt doesn't mean there might not be a problem. So,

you have to be proactive, and make sure that if there's something going wrong,

you catch it before there's a problem.

Brian commented on Michael’s statements: “Nailed it. You can’t wait to the last minute.” Michael stated, “Yeah, wait to the last minute and you might have a death sentence.” Brian added: “Yeah. If you stay ready you don’t have to get ready.”

Annika talked more about what she does to take care of her health:

I stay active. I go to sleep on time because the process of aging is you’re not able

to sleep, maybe during the night. And also, I talk with my doctor. He said that it's

very important to wake up at the same time, not, like, sleep until 11:00, 12:00p.m.

Make a routine.

Brian commented: “Yeah. There’s a circadian rhythm in the body, so that’s true.” Michael added how he has changed his lifestyle to be healthier as he has aged:

It did have an effect on me in terms of how I'm dealing with aging. Basically, as I got older, I just suddenly decided I had to lead a healthier lifestyle. I had to modify my diet, stop eating a lot of junk, uh, exercising. Basically, just realizing that you can't do things when you’re older that you did when you were younger—your body just doesn't function the same, so you have to take care of it a little better.

Honesty in Relationships. The participants also had a discussion about the importance of honesty in romantic relationships, and also other things that help make relationships work. Michael said honesty and openness are important: “Honesty, being open.” Brian added that understanding what one’s love languages are can be helpful:

Yeah. I read this book called, The Five Love Languages, and that helped me

because I was talking to someone else who had, like a disability in a way. She only

had four toes instead of five, so she kind of walked slightly—you couldn't really tell,

unless she had heels on. You couldn’t tell when she had on shoes … And so, she

read and introduced me to a book called, The Five Love Languages, and it kind of

helped our situation. We found out what our love language was. It's like words of

affirmation, gifts, physical touch … But that book helped us.

Annika stated that understanding is important in relationships:

I think people should understand each other. And you know, if … I'm talking about

a relationship between, in a couple, they should understand each other. Especially

when one is older than the another one, and we can see that.

Ways of Coping with Losses. The participants talked about how they deal with losses and changes related to aging. Brian expressed the importance of making one’s own meaning about situations:

Well, I went to this seminar one time with this guy named Tony Robbins, and he

was talking about how nothing has meaning except for the meaning you give it, so

that's been helping me out. When something happens, instead of saying, “Oh, it

means this way,” it's, like, it doesn't mean anything. It means whatever I give it. So,

even with the aging and disability stuff, personally, I'm just, like, “What meaning do

I want to give this situation?” If somebody tries to make fun of me, seeing my hand

shake or speaking more into my left ear than my right ear or something like that, I

just give it a different meaning. Going to that seminar that one time helped me out.

I asked Brian what the meaning would be for him, and he said that he works on having compassion and not judging people who treat him badly or people who live on the street. Michael talked about how he deals with change or adversity in situations in his life by trying to find a solution:

Life just seems to be one challenge after another. So, you just have to work one

step at a time. If you just accept that life is a struggle. Okay? Life is going to be full

of complications. And each time, something arises, you just deal with it and try to

find a solution.

Being Grateful for One’s Situation. The participants discussed how they view other disabled people, and if they think others’ impairments are worse than or equal to their own impairments. Brian said that he is grateful for his own situation and that his disability is not as severe as some other people’s. Michael added that he feels there are a lot of people worse off than he is:

I feel there are a lot of people much worse than myself. At least I can function

pretty normally. Now it may take a little more effort, but it’s still basically, mostly

normal. I can still get around, do most of the things I have to do, with certain

limitations. But in general, I can try to work around it, not everyone can.

Focus Group 3

Self-Care and a Positive Attitude. The group discussed ways that they practice self-care and having a positive attitude, to stay healthy. Sophia talked about strategies that she uses to cope with disability and aging, including having a positive attitude:

Well, I try to have, like a good, positive attitude, and family and friends and

hobbies. I do artwork and stuff like that, and I have more hobbies than I did when I

was younger, actually. You know, life experience, dancing, yoga, because

everything is fitness to me now. I try to be as healthy as I can … So, I think that

really does help.

Patrick added that the way he practices self-care is to have a good attitude and also have hobbies to take his mind off things:

Yeah, about myself. I think it is most likely to have a good, mental attitude in the

way you think about yourself. But me, I like to use powerful distractions so that I

can keep my mind off some things. You know, I might be an old man, but I also

have hobbies. And sometimes I do some light exercises to loosen my mind up. And

I also watch some movies. They say there are movies for everybody, so, definitely

there are movies for people like me. So, I take my time to keep my mind off things

sometimes. Yeah.

Beverly commented, and also talked about going for walks: “That’s so good! Yeah, I make sure to go for a walk. I have to walk every day. I mean, even if it is raining, you know.” Patrick stated that he walks also: “Yeah. That works, too. Yeah.” Beverly added: “Yeah. Just like Sophia said, and having some activities, physical activities, is so important, especially with a disability because your body’s already kind of fighting.”

Patrick also talked about the importance of having a good diet:

I'm avoiding some foods that people eat. I can say I'm eating more fruits, too. You

know, my body is starting to reject some foods. So, I'm eating more fruits and

vegetables, yeah. I mean, I don't have any complications, but I’m better safe than

sorry.

Also, Sophia said that having pets, plants, or other things that help with a positive mindset can be beneficial. Beverly added:

And you know, you and Patrick and Sophia have healthy diets. But I find that I

need chocolate, and I often have sweets and that’s not healthy, but that’s my

reward for keeping going, so (laughs) … full of sugar.

Getting Support from Peers and Other Resources. The participants expressed wanting to get support from others who understand them, and also from other resources in their communities. Patrick stated that he has a desire to be around people like himself who are his age, and Beverly said that being a counselor and helping other people helps her to appreciate what she has. Also, Sophia talked about the importance of doing research online to find information and resources related to disability and aging.

Ways of Coping with Losses. The participants talked about ways that they cope with loss. Sophia stated that she deals with loss or change in her life by doing positive things:

Yeah, I try to go to support groups, so, online, and now I have Zoom groups I go

to, so, that helps. Like people who might be dying or a loss of a job that I had,

things like that, I try to substitute it with positive things, or like, comedy, some free

comedy meetups that I belong to. Or even like Patrick said, TV shows. Anything

that could cheer me up, you know, from some of my losses.

She added that she also does some coaching with her peers: “Yeah, well, I try to do some coaching too, so that helps.” Beverly stated: “That helps, yeah.” Patrick expressed that he would also like to try doing counseling with people, and support from others and comedy are helpful:

Well, I think that I’d like to try some counseling, too. I haven’t … I think it sounds

fun and I’d like to. Like with this interview I love sharing what I know and also love

hearing from people. So, I think that’s what I’m going to do in the near future …

Well, I do use social media. Though, not much, just some support groups for

people like me, so, I get some motivation there, we talk, you know. Also, I

subscribe to some services. Like what Sophia was saying, some comedy, I don’t

try to watch psychological shows. I like more comedies, to get a good laugh, here

and there. Yeah.

Beverly and Sophia also stated that they do not like horror movies. The participants also talked about the importance of researching alternative treatments, considering different treatment options, and sharing resources with other disabled people. Also, Sophia said that doing meditation helps her relax during difficult medical procedures, and Beverly stated that positive self-talk can be valuable for a person getting through a difficult situation.

I asked the participants how they deal with experiencing stigma or discrimination. Sophia stated that she advocates for herself:

Well, like if it’s an individual, I try to just blow it off. Or if it’s something serious, I

would write a letter to the head people or something like that. And because one

time I felt like I got cheated with a bill. In (city she lives in), they overpriced taxes

for a restaurant. There was that, so, I dealt with that. And I was cheated a bit, it

might have been aging related. But as an example, I wrote a letter and I got a free

appetizer. So, I try to be assertive and that helps.

Beverly added more about the importance of advocating for oneself:

Yeah. You have to advocate for yourself when you experience that. I’ve

experienced it, and I do get angry sometimes, too. I can’t say I’m always as nice as

Sophia (laughs). I get angry, I'll write letters or I’ll fight back. But it is something that

is more about the person persecuting you than about you. It’s the person

persecuting you being ignorant usually.

Patrick talked about the importance of staying positive when he experiences stigma:

Well, for me, I don't take it up much in my head. But sometimes I see I’m a human

being and I experience emotions. So, when I get such kind of stigma, sometimes I

feel like that’s part of acceptance. So, I just accept myself because there’s nothing

I can change about it. But the most important thing for me is that I stay positive and

ignore some stigma situations that happen to me. And I accept that, yeah, and at

this point, that’s me.

The participants’ descriptions of how they stand up for themselves and have a positive attitude are good examples of how older disabled people can be resilient and advocate for themselves (Falvo, 2005).

Henry

Social Support and Planning. Henry talked about some ways that he deals with disability and aging, and stated that social support and seeking understanding and compassion are important to him: "By being with friends, where I can be intuitive to people that either don’t have disabilities, don’t want to acknowledge them, or people that I can maybe get cognizance with." He went on to described how deals with losses or changes:

If I know about a loss or a change coming, I can sometimes manage it better.

Sometimes I can’t or don’t, and it will vary ... Sometimes all I need is some

compassion and patience, and sometimes it’s very hard to get those.

He also stated that sometimes he feels uncomfortable about being vulnerable and wonders what he should share about his disability. However, he described a positive experience where he expressed his concerns, and a doctor was helpful to him by telling him about funds that were available for his eye treatments:

I just wonder how much you should keep in the closet … I sometimes make a

mistake. But for every mistake, there’s more good people. A recent vignette was

yesterday when I told the director of the learning institution where they give

degrees for optometry, and they’ve been treating my eyes at least three quarters of

the time. He was a big help in telling me the funds available.

The participants’ experiences of being assertive and positive show how older disabled people can stand up for themselves, and are examples of resiliency (Ryff, 2014).

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Disability and Aging: Health, Identity,

and Resilience in People With Lifelong

Impairments

Holly Siegrist, Ph.D., Psy.D.