I must have missed this one the first time around. I'm moved by your phrase "inhabiting the fringes of disability", as it gives words to exactly where we are in with a family member. It's been a slow drift from injury, illness, lifestyle choices into a place that is likely to require daily assistance and mobility-friendly access for the rest of their life (hopefully still decades). I have fresh eyes for the ways in which these considerations and accommodations are essential for someone who *hasn't yet embraced the label or identity* of living with a disability. And yes, when a built environment already includes physical accessibility, what a gift that is. Otherwise, that fresh, sharp, psychological experience of limitation kicks in every time a person has to newly figure out how to get where they need or want to go. I think sometimes our society unconsciously defines "disability" as a permanent, life-long aspect of a person-- being born blind or deaf, or using a wheelchair for cerebral palsy. But here on the fringes of disability, it's obvious in hindsight that so many people *arrive* at a disability through illness, injury, or aging. And they don't have any prior practice with the logistical toll it takes to maneuver, much less the relational toll (perceived or real) in acknowledging vulnerability and seeking and accepting help for things they used to be able to manage.
I keep meaning to mention this on these threads, but a still-practising architect friend of mine and I have had some interesting Twitter back-and-forths about what the world would look like if you designed for strollers (the specific example was buses), and we came to the conclusion that stroller access and wheelchair access are, in fact, very similar, and (like in the classic example of curb cuts) if you design for one, the other will inevitably benefit.
However, the great Catch-22 of disability/accessibility design is that some needs are mutually conflicting -- and that's where the policy lines get really, really fuzzy. Whose needs do you prioritise? How do you make egalitarian accommodations?
Thanks so much for highlighting my comment. I've been thinking further. Part of asking for help and accepting it that I come back to is being willing to recognize the vulnerability in losing autonomy and being willing to trust that those around us really care and are willing to help.
Not all older people can do that, because of their own fears and suspicions, resentments and so forth.
I can't help but think about those without families, and the comment from Catherine really brings home the point that we sometimes make our families in ways that society doesn't always expect or envision, and it works.
On the "not wanting to be a burden" topic. My husband's aging parents put up active resistance to any help with housekeeping or yard work while insisting "we don't want to be a burden." The time and energy we spent worrying about them and checking in to make sure they were OK was actually a bigger burden than hiring and paying for some help! Sometimes accepting help from your loved ones RELIEVES their burdens. As I age I keep this in mind.
1. A part of this conversation needs to be the prevalence of conflict within the disability community. There is culture war politics over gender politics, race, sexuality issues and political ideology. But more importantly, misunderstandings that are harder to get at quickly over economic class, those who have multiple disabilities, and a less hierarchical distinction between those born with a disability and those becoming disabled later, gradually or suddenly. Usually there is an effort to understand in most organizations, but my experience as a totally blind person in the disability community has made me more forgiving of the failures of those who are not disabled. Perhaps it just goes along with my temperamentally more conservative turn in other areas.
In my Church community and other places, I have found it most important to be a contributor. I'm in my Church choir. But I recognize my privilege as a largely physically healthy disabled person, and other factors making it easier for me to become a core member of a team, as well as my being blessed to find a good fit. My Traditional Latin Mass community has no active ministry to the disabled; it's really more of an "actions speak louder than words" kind of mindset.
I have particularly considered my status as a totally blind person as I have recently made a career transition to workingg in the field of blindness. I am largely working with people who are losing my vision. I have had to be more sensitive to the ways in which we have adjusted very differently. Since we're in a newsletter about feminism, I find it interestingg that most of the clients who want one-on-one help in my experience are women, though that may be just anecdotal.
Despite what I said in my first paragraph, I do strongly support universal design, and hope to continue learning more about it and get involved in local efforts especially.
we cannot be all things to all people. sometimes it truly is our intentions that matter. people do need to speak up if they need special accommodations especially if their need for accommodations is something that cannot be seen. no building, no curriculum, no social situation, no person can make all situations perfect for everyone who might be there to participate. it's just not possible. as boomers begin to lose their hearing and vision, it's not up to the rest of the world to figure out how to make things better for us. we need to take action to make the world better for ourselves in ways that we can - hearing aides, improved lighting, sitting up closer in classes, arriving earlier to sit closer, etc. we can ask for larger signage and brighter lights but if that puts a burden on the 'host' of an event, then we make ourselves a burden when we can fix things for ourselves. obviously not all 'disabilities' are so easily fixed. but, if the person who needs help with a 'hidden' disability doesn't reach out, they shouldn't take umbrage at my inability to make things great for them - as much as i might like or be willing to.
I'm a totally blind man and would like to share some thoughts in this conversation. It's hard to know where to start with so many topics, from design accessibility to caregiving to more general inclusion in the community. I'll be back later today.
I must have missed this one the first time around. I'm moved by your phrase "inhabiting the fringes of disability", as it gives words to exactly where we are in with a family member. It's been a slow drift from injury, illness, lifestyle choices into a place that is likely to require daily assistance and mobility-friendly access for the rest of their life (hopefully still decades). I have fresh eyes for the ways in which these considerations and accommodations are essential for someone who *hasn't yet embraced the label or identity* of living with a disability. And yes, when a built environment already includes physical accessibility, what a gift that is. Otherwise, that fresh, sharp, psychological experience of limitation kicks in every time a person has to newly figure out how to get where they need or want to go. I think sometimes our society unconsciously defines "disability" as a permanent, life-long aspect of a person-- being born blind or deaf, or using a wheelchair for cerebral palsy. But here on the fringes of disability, it's obvious in hindsight that so many people *arrive* at a disability through illness, injury, or aging. And they don't have any prior practice with the logistical toll it takes to maneuver, much less the relational toll (perceived or real) in acknowledging vulnerability and seeking and accepting help for things they used to be able to manage.
I keep meaning to mention this on these threads, but a still-practising architect friend of mine and I have had some interesting Twitter back-and-forths about what the world would look like if you designed for strollers (the specific example was buses), and we came to the conclusion that stroller access and wheelchair access are, in fact, very similar, and (like in the classic example of curb cuts) if you design for one, the other will inevitably benefit.
However, the great Catch-22 of disability/accessibility design is that some needs are mutually conflicting -- and that's where the policy lines get really, really fuzzy. Whose needs do you prioritise? How do you make egalitarian accommodations?
Thanks so much for highlighting my comment. I've been thinking further. Part of asking for help and accepting it that I come back to is being willing to recognize the vulnerability in losing autonomy and being willing to trust that those around us really care and are willing to help.
Not all older people can do that, because of their own fears and suspicions, resentments and so forth.
I can't help but think about those without families, and the comment from Catherine really brings home the point that we sometimes make our families in ways that society doesn't always expect or envision, and it works.
On the "not wanting to be a burden" topic. My husband's aging parents put up active resistance to any help with housekeeping or yard work while insisting "we don't want to be a burden." The time and energy we spent worrying about them and checking in to make sure they were OK was actually a bigger burden than hiring and paying for some help! Sometimes accepting help from your loved ones RELIEVES their burdens. As I age I keep this in mind.
1. A part of this conversation needs to be the prevalence of conflict within the disability community. There is culture war politics over gender politics, race, sexuality issues and political ideology. But more importantly, misunderstandings that are harder to get at quickly over economic class, those who have multiple disabilities, and a less hierarchical distinction between those born with a disability and those becoming disabled later, gradually or suddenly. Usually there is an effort to understand in most organizations, but my experience as a totally blind person in the disability community has made me more forgiving of the failures of those who are not disabled. Perhaps it just goes along with my temperamentally more conservative turn in other areas.
In my Church community and other places, I have found it most important to be a contributor. I'm in my Church choir. But I recognize my privilege as a largely physically healthy disabled person, and other factors making it easier for me to become a core member of a team, as well as my being blessed to find a good fit. My Traditional Latin Mass community has no active ministry to the disabled; it's really more of an "actions speak louder than words" kind of mindset.
I have particularly considered my status as a totally blind person as I have recently made a career transition to workingg in the field of blindness. I am largely working with people who are losing my vision. I have had to be more sensitive to the ways in which we have adjusted very differently. Since we're in a newsletter about feminism, I find it interestingg that most of the clients who want one-on-one help in my experience are women, though that may be just anecdotal.
Despite what I said in my first paragraph, I do strongly support universal design, and hope to continue learning more about it and get involved in local efforts especially.
we cannot be all things to all people. sometimes it truly is our intentions that matter. people do need to speak up if they need special accommodations especially if their need for accommodations is something that cannot be seen. no building, no curriculum, no social situation, no person can make all situations perfect for everyone who might be there to participate. it's just not possible. as boomers begin to lose their hearing and vision, it's not up to the rest of the world to figure out how to make things better for us. we need to take action to make the world better for ourselves in ways that we can - hearing aides, improved lighting, sitting up closer in classes, arriving earlier to sit closer, etc. we can ask for larger signage and brighter lights but if that puts a burden on the 'host' of an event, then we make ourselves a burden when we can fix things for ourselves. obviously not all 'disabilities' are so easily fixed. but, if the person who needs help with a 'hidden' disability doesn't reach out, they shouldn't take umbrage at my inability to make things great for them - as much as i might like or be willing to.
I'm a totally blind man and would like to share some thoughts in this conversation. It's hard to know where to start with so many topics, from design accessibility to caregiving to more general inclusion in the community. I'll be back later today.