Your Relationship With Disability

17:59 May 20, 2014 62

by Sacha Dylan

A brief background post from me today. It’s often useful to consider how we each relate to disability, so we understand better where one another are coming from. Please think about which of these apply to you (and there may be more than one):

(A) I am a disabled person.
(B) I have a family member who is a disabled person.
(C) I have a friend who is a disabled person.
(D) I have a workmate who is a disabled person.
(E) I do disability-related work.
(F) I have studied disability.
(G) I do not know much about disability but I'm interested.
(H) Other - please describe.

Which of those fit for you? (no strings) And how does that shape your thinking?

A worldwide Creative Commons Attribution 3.0 Unported License applies to this post. Sacha's personal website is sachadylan.com

62 responses to this post

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Sacha, 18:18 May 20, 2014

I'll get this rolling. I fit into A to E, and I guess my involvement in policy work is equivalent to F.
I've been disabled since I was young, but I never really came to grips with that side of my life until I had a disabled partner and started working on disability activism and policy.
This has certainly changed the way I see the world. I've always been attracted to the big picture, and helping to connect people with knowledge. So many rich stories and possiblities that I believe most people do not see yet. Untapped wisdom and perspectives and heart.
More practically, it has also helped me be more forgiving of my own personal limitations, bolder about challenging silly barriers, and acknowledging of my strengths.

Ak • Since May 2008 • 19745 posts Report
nic.wise, 19:30 May 20, 2014

Righto then:
(G) I do not know much about disability but I’m interested.
(H) Other – please describe.
I'm an app developer (amongst other things) and where possible, I try to make sure my apps are as accessible as possible, especially to visually impaired people (if I have the term wrong, sorry - still getting used to whats "correct"). I even won an award/contest for it from Transport for London, which I was quite chuffed about.
Planning on doing a similar app for Auckland when I get time and can work out if the APIs are freely available.

Auckland • Since Nov 2006 • 87 posts Report
Russell Brown, 19:50 May 20, 2014

A: No. I think I have characteristics of attention deficit disorder, but I don’t regard it as a disability.
B: Yes. Both my sons are on the autism spectrum. I do feel that this category might benefit from a distinction between parenting and other family relationships. The former is, I think, a particular challenge.
C: Yes! Also, neighbours, with varying disabilities for more than a decade. Supporting neighbours is important and not always easy.
D: No.
E: Only in the sense that publishing blogs and fronting for interviews is work.
F: As a parent, yes. Formally, no.
G: I could always know more, but my children have taught me a lot. About the world.
H: …

Auckland • Since Nov 2006 • 22850 posts Report
Sacha, in reply to nic.wise, 19:58 May 20, 2014

I even won an award/contest for it from Transport for London, which I was quite chuffed about
onya.
if the APIs are freely available
Auckland Transport are opening up more of their data next week in the HackAKL event.

Ak • Since May 2008 • 19745 posts Report
Sacha, in reply to Russell Brown, 20:02 May 20, 2014

might benefit from a distinction between parenting and other family relationships
True. And sibling relationships are quite distinctive, as seen in that recent Attitude tv story about Claude and his family.

Ak • Since May 2008 • 19745 posts Report
Alister, 20:06 May 20, 2014

First post!
(A) I’m severely hearing impaired since birth.
(C) I have a friend who’s also hearing impaired and another who’s Deaf.
(G) I haven’t had much exposure to the deaf/Deaf community, I was raised as a hearing person and as a result I don’t quite fit into the hearing or the deaf community. Although I have integrated exceptionally well with the hearing world.

New Zealand • Since May 2014 • 1 posts Report
Sacha, in reply to Alister, 20:14 May 20, 2014

Thank you, Alister.

Ak • Since May 2008 • 19745 posts Report
Rosemary McDonald, 20:26 May 20, 2014

(A) after reading about Temple Grandin today....but not really a disability.
(B) My partner is a high tetraplegic (pre ACC)'
(C)Quite a number of friends/acquaintances live with impairment/disability.
(D)When I was in paid work...yes.
(E)Hmm! as an unpaid family carer...also our family provided respite care for many disabled children over the years. I used to get paid as a carer, in a former life...
(F)Of course I have studied disability...how could I not? But, not formally...but some of my best friends....

PS Sacha....what a good idea!!!!

Waikato, or on the road • Since Apr 2014 • 1346 posts Report
Russell Brown, in reply to Alister, 20:42 May 20, 2014

First post!
Nice one. Welcome in.

Auckland • Since Nov 2006 • 22850 posts Report
Ross Mason, 20:50 May 20, 2014

C - Parashooter(s)
D - Amputee who is also a Parashooter Took me years to convince him that if he did the work he could shoot at the Paralympics. He might yet!!
E - Coach Parashooters

Upper Hutt • Since Jun 2007 • 1590 posts Report
Sacha, in reply to Ross Mason, 20:54 May 20, 2014

cheers, Ross

Ak • Since May 2008 • 19745 posts Report
Paul Campbell, 21:28 May 20, 2014

I dunno (H) or (A) - last year I was certainly disabled, my temporary parking permit ran out last month at about the right time, threw it away.
So I've made a temporary visit to the disabled community, but not quite left ... I'm still fighting the city who want to take ALL the on-street parking places from the block that contains the local physio pool to make bike lanes, I know the pool got me walking and I could never have accessed it without those spaces

Dunedin • Since Nov 2006 • 2623 posts Report
Sacha, in reply to Paul Campbell, 21:34 May 20, 2014

I'm still fighting the city
Ta. How can the rest of us help you with that?

Ak • Since May 2008 • 19745 posts Report
Sacha, in reply to Rosemary McDonald, 21:35 May 20, 2014

not formally
snap

Ak • Since May 2008 • 19745 posts Report
Robert Harvey, 08:11 May 21, 2014

G: and H:
I guess people would consider me to be not disabled nor impaired, though frequently irritating. I identify with some aspects of the Aspergers spectrum. I found ‘Look Me In The Eye’ by John Elder Robison liberating, in the sense of getting permission to be who I am, warts and all. And I have come to suspect that most people are somewhere on various capability spectra -- that an awareness of disability in general can help me be aware of people more for who they are, rather than who they feel they ought to be. I don’t want to make too much of this; it’s simply my way of grappling with socialisation, and I am not very good at it. However thinking of all people as variously disabled rather than creating a ghetto of ‘the disabled’ seems to me a better approach to organising a community.
Many thanks for this column, Russell and all.

Westmere • Since Nov 2006 • 66 posts Report
Paul Campbell, in reply to Sacha, 09:00 May 21, 2014

Ta. How can the rest of us help you with that?
probably not much at the moment – the issue seems to be quiet at the moment while the MoT ponders (I already wrote them), when the city holds hearings I’ll go down and make my point
In the mean time my biggest problem is our lefty councilors who seem to think that bikes trump all … I got the brush off when I wrote them. All they have to do is put the south bound lane on the other side of the (1-way) road – not only would it leave parking within just-started-using-crutches hobbling distance of the physio pool (about 100m) but it would also save a bunch of street trees, and run the bike lane on the Uni side of the road rather than forcing all the students to cross SH1

Dunedin • Since Nov 2006 • 2623 posts Report
Cecelia, 09:48 May 21, 2014

A, B and G. Having read PA for YEARS I've been educated in many things including attitudes to disability, mainly autism. I often forget to watch it but Attitude on TV ONE Sunday mornings is such a fabulous show that it deserves a mainstream time slot. I get angry that trivialities prevail and I'm always grateful when one of you points to the show on this site or Twitter.
My husband has dementia and is in a home. This has thrown me into the world of mental disability.
Now I'm kind of disabled myself although I think of it as being disfigured. I'm a little bit scarred on the face and a little bit speech impaired after several cancers. Can't eat proper food. Very mobile but always found social interaction hard and now it's going to be even more of a challenge. I'm looking for a creative outlet (I'm sort of newly retired) or some sort of community work where I can help others at the same time as getting out there among people.

Hibiscus Coast • Since Apr 2008 • 559 posts Report
Angela Hart, in reply to Robert Harvey, 12:43 May 21, 2014

thinking of all people as variously disabled rather than creating a ghetto of ‘the disabled’ seems to me a better approach to organising a community.
nicely put Robert, that's the way I see it too.
A I have minor impairments which do not usually cause disability so, no I'm not disabled in the sense Sacha intends.
B My adult daughter has a physical disability.
C Several friends are disabled and a few neighbours.
D When I worked in the wider world I had colleagues with disabilities from time to time.
E Like Rosemary I choose to support a family member who needs significant care because it's the best and safest option for us. These days I'm paid under Funded Family Care but it stinks that Rosemary isn't. Similar need, similar circumstances, legalised discrimination against spouses and partners. UNFAIR!
F I haven't formally studied disability but I've learned a lot from experience and continue to do my own research.
G There's a lot I don't know about everything including disability, but learning is rewarding.
How does my relationship with disability shape my thinking?
I try not to make assumptions.
I recognise the planning, thinking, time and effort that goes into making the most of each day.
I try to be observant.
I understand that small actions/obstacles can make huge problems that there's no need for.
I feel part of a disenfranchised but large and potentially powerful minority.

Christchurch • Since Apr 2014 • 614 posts Report
Sacha, in reply to Angela Hart, 13:14 May 21, 2014

small actions/obstacles can make huge problems that there’s no need for.
yes

Ak • Since May 2008 • 19745 posts Report
Emma Hart, 13:17 May 21, 2014

A/ I am, from time to time, disabled by my illness, much as you would disable a rifle or a USB device. Fatigue and pain give me enormous problems with mobility, and my flare-ups of ‘not being able to walk across the room’ mean I can’t work a conventional job. Coping strategies over the last nearly two decades have been about changing my life and my world so that my illness disables me as little as possible.
B/ My daughter is hearing-impaired from birth. Her hearing loss is at a level where she can cope – in a disabled fashion – in the hearing world, and so I often feel she stands separated from both that, and the Deaf world.
C & D/ I have friends and co-workers who are disabled in the same way I am – by chronic illness. The internet is stuffed full of people dealing with issues like mine.
F/ It’s not really possible to have a disabled child and not become saturated with information – good or not – about disability.

Christchurch • Since Nov 2006 • 4651 posts Report
Rob Stowell, 13:36 May 21, 2014

(A) No
(B) Yes.
(C) Yes.
(D) Yes, but not close-to-hand.
(E) Yes, but it's currently a small part of my work.
(F) Not formally, but yes informally.

Whakaraupo • Since Nov 2006 • 2120 posts Report
Sacha, 13:39 May 21, 2014

Interesting how many of us have learned a lot informally rather than formally. Is that also how we picked up our broader notions of what disability is about, do you think?

Ak • Since May 2008 • 19745 posts Report
Rosemary McDonald, in reply to Angela Hart, 13:42 May 21, 2014

E Like Rosemary I choose to support a family member who needs significant care because it's the best and safest option for us. These days I'm paid under Funded Family Care but it stinks that Rosemary isn't. Similar need, similar circumstances, legalised discrimination against spouses and partners. UNFAIR!
Thank you Angela.

Waikato, or on the road • Since Apr 2014 • 1346 posts Report
Angela Hart, in reply to Sacha, 14:02 May 21, 2014

Interesting how many of us have learned a lot informally rather than formally. Is that also how we picked up our broader notions of what disability is about, do you think?
Good question. How many people actually do formal study on disability, I wonder?
Not many, I suspect.

Christchurch • Since Apr 2014 • 614 posts Report
lesley maclean, 16:45 May 21, 2014

This is my first post here too.
(B) I'll answer B first. My son is on the autism spectrum. At age 12, he currently says he sees this as being a (prefereable) difference more than a disability. And as his parent I have used both 'difference' and 'disability' to describe him, depending on the settings. I think this term conveys different things depending on who you talk to.
(A) I have many of the same traits as my son, so place myself also somewhere on the wider autism spectrum. I am unsure if I that places me in the disabled category, although sometimes I think the world is stacked up against people like me. So I guess I see disability more in the social model of disability sense.
(C) I have friends in the same fuzzy category as me. and know various other people dealing with impairments and difficulties functioning in the world as it currently manifests.
(D) no
(E) I would like to do disability-related work.
(F) I have studied disability informally, but fairly extensively. As a parent initially, but mostly for my own interest and desire that the world be more disability-friendly.
(G) There is always more to learn. Am particularly interested in the social aspect, as in how other people respond or fail to respond to disability.

christchurch • Since May 2014 • 2 posts Report