Re: Experiences with/as disabled people in cohousing
From: Allison Tom (allison.tomtelus.net)
Date: Tue, 6 Mar 2018 11:38:21 -0800 (PST)
Hi Dick,

I think I read you correctly.  You wrote:

But I cannot imagine that anyone in the group would resist welcoming someone who wanted to be part of a cohousing community.

I responded by saying that I'm interested in the difference between what we "imagine" and what people have thus far /experienced./

Allison


On 2018-03-06 11:32 AM, Dick Margulis wrote:
You have included my name associated with something I don't recall writing. I'm not sure who that comment should actually be attributed to, but I'm pretty sure it's not me. (Mistakes happen. Just wanted to draw your attention to it.)


On 3/6/2018 2:21 PM, Allison Tom wrote:
Thanks to everyone who has responded to my question so far - some have responded privately instead of on the list.  Some responses follow.

_Ann Zabaldo_:

Yes, I'm trying to understand why there seems to be a cohousing-wide unspoken desire to not encourage disabled people to join communities. I'm also curious to know if I'm reading this correctly.

There is definitely a silence about disability/ability in the cohousing literature's "inclusivity/diversity" talk.  When groups itemize the kinds of people they hope to attract, the list can name age (restricted or open), family status (e.g., "we want families with children!), racialization, class.  But disability just doesn't make it onto the list.  I don't think it's an accident.

My own reading of this is that the following things may be happening:

1) Experiences with disabled individuals who expected more than the community could provide.

2) Experiences (as you note below) with times when the community can be strained by co-occurring needs

But I also wonder if "disability" may, as you note again, be a label that names the concern about people who may ask too much - and people who may ask too little - or people who may have difficulty functioning in community.

I get it that any one community can only "carry" the task of care for a limited number of members.  But "being disabled" does not equal "needing specific care (from the community)," as you also indicate.

Is it possible that "disability" is the way difficulties have been labelled, experienced and remembered when other issues with individuals have emerged?  Is is possible that "disabled people" and "difficult people" have been commingled in the collective imagination?

Are expectations of universal participation in some tasks (clean up, cooking?) unnecessarily discriminatory?  Are community decisions to not hire outside assistance to run the community unnecessarily discriminatory?  I can't clean my own home; I'm sure as heck not going to clean any other spaces.  But I'll pay my share of costs or do something else when it's time to clean.

Are expectations of energy levels unintentionally discriminatory?

I know some really difficult people who are not identified as disabled!

I self-selected out of a forming community because I couldn't keep up with the meetings and participation demands of the formation stage.  I couldn't find a dignified way to ask for accommodation (and I'm not really that good about being forthcoming about my needs and limitations, which are invisible).  (I have a good relationship with those folks, I'm not making a sideways swipe here.)

But when I've talked to experienced cohousers about my idea of a formal accommodation process, I've sensed a recoil and a sense that "we don't want to encourage disabled people to apply."

Is it possible to have frank conversations about this?  Maybe not on an open listserve, but somewhere?

_Philip Dowds

_I do understand that many people who don't use a wheelchair are oblivious of the barriers that architecture can present.  But I don't understand why you have chosen to "set aside" vision and hearing or why you have not addressed the kinds of barriers that are invisible but nonetheless really difficult.  What about people who fatigue? Who are uncommonly anxious? Who have difficulty understanding and processing others' emotions?  I think it's really dangerous to "simplify" disability since the needs raised by one kind of disability can be the opposite of needs raised by another. The category is so unbelievably diverse, it's critical to not oversimplify.  Good architecture can indeed help include some people, but it won't really address a whole host of other issues.

_Dick Margulis

_What I'm trying to get at in my question is the divide between those of us who haven't lived in cohousing yet and imagine all kinds of willingess to accommodate in the future and those who have lived in cohousing and have experiences that make them less optimistic.

I hope we can continue this conversation!

Thanks to all who have responded so far,

Allison
__
__

On 2018-03-05 9:36 AM, Ann Zabaldo wrote:
Allison — this is a much clear delineation of the problem you are seeking to address than your first email.  So I’m delighted we have gotten to the crux of the issue you are trying to surface.

Just to be sure I’m understanding the issue … you are concerned

— that there are communities that have had “bad experiences” trying to provide accommodation to folks w/ disabilities.

— And that there is some reluctance by folks who have had these experiences.

I’m sensing the reluctance may be

—fear of being labeled as “prejudiced”,

— fear that it is not “politically correct” to have any viewpoint other than 100% enthusiasm and support for those w/ disabilities

— fear that if there is a problem w/ this in the community then it’s the abled bodied folks that are the source.

Am I anywhere close to understanding the problem?  Did I miss the mark entirely?  Feedback, Allison?

I will likely have to write several emails because my day is so scripted I have 15 mins. here, 15 mins. there, etc.

And, full-disclosure, I am a power wheelchair rider living at Takoma Village Cohousing in Washington DC now starting year #18,  While I’ve had a disability for 40 years it’s only the last 13 years that I’ve been using a power wheelchair full time.

Oops.  Conference call time. Back when I can …  feedback requested as per above.  Thanks!

Best --

Ann Zabaldo
Takoma Village Cohousing
Washington, DC
Principal, Cohousing Collaborative, LLC
Falls Church, VA
202.546.4654

As long as you have two or fewer … your ducks are always in a row.  The Covert Comic



On Mar 5, 2018, at 11:52 AM, Allison Tom <allison.tom [at] telus.net> wrote:

Hello Dick,

My sense is that there are communities that have had bad experiences trying to accommodate disabilities and that there is a reason other than prejudice or "just not being aware" that lies behind the hesitation I sense.

I'd like to know if I'm over-reading this, if people have had experiences that have led them to this reluctance, and so on.  Of course, I'm also interested in situations where disabilities have been successfully accommodated, but I'm trying to get at the quieter edge of this as well.  I know that a listserve may not be the right place to probe such a question, which is why I'm open to other ways of hearing from people.

Thanks for the initial responses, and I hope to hear more.

Allison


On 2018-03-05 8:42 AM, Dick Margulis wrote:
Maybe I'm naive, but . . .

I'm a reasonably able person, meaning whatever minor disabilities I have do not rise to the level that someone would identify me as needing special accommodations of any sort. I'm stuck with my white male privilege.

Nonetheless, I don't find it the least bit difficult to make space in my mind for accommodating others' needs in the cohousing community we've designed and are about to build. This has been an issue front and center throughout our long years of working with architects and engineers and working within our own group to establish policies and rules. And the architects, engineers, and other consultants are all on the same wavelength with us on this topic.

Yes, it's entirely possible we've overlooked something and will have to make adjustments (in construction details as well as in policies) as more people with various kinds of disability join us. But I cannot imagine that anyone in the group would resist welcoming someone who wanted to be part of a cohousing community. (This is completely aside from the fact that we are subject to fair housing laws, which mandate that we behave in the way we are inclined to behave anyway.)

I wonder whether people whose inclination is to ignore other people's challenges and avoid accommodating them as long as their own needs are met are good candidates for cohousing in the first place.

Dick Margulis
Rocky Corner cohousing
Bethany CT
www.rockycorner.org



On 3/5/2018 11:16 AM, Ann Lehman wrote:
  From Karen Jolly who is a partially disable member of our community

“First, there must be complete accessibility.  Our building does not meet that requirement.

The community must recognize that the community tasks need to be assigned with abilities in mind.  This means some folks may do the same task indefinitely (like mopping floors) and there may not be an equal division of responsibility.

The issue of potential extra care should be addressed.

Personally, cohousing is an excellent choice as long as the community has addressed the extra care that may be required.

Karen”


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