Community engagement with people with disability

 

This week, I’ve been reflecting on the responses I’ve received to my recent blog post about Mary Ann Hiserman, my friend in Berkeley who was a wheelchair user and activist for people with disability. I’ve been thinking about the actual experience of being “locked out” of an environment. And comparing it to being “locked out” of community engagement processes. And the whole issue of community engagement with people with disability.

 

Mary Ann had a challenging life but I am confident that she would not have considered herself “disabled”. I believe that was largely because of her courage but also partly because of the culture of Berkeley and northern California in the 1970s. With its mild climate, California has always been an attractive place to live for people with mobility impairments. It’s much easier, year-round, managing in a wheelchair, with a cane or walker than it is in the snow of the Midwest or the eastern United States.

 

Separate is not equal

 

As our communities age and more of us live longer and with disability, we will finally have to accept what Mary Ann taught me in the seventies: separate is not equal. As with accessibility, so with engagement.

 

Two principles can guide our engagement policies, planning and design.

 

Mainstreaming

 

The first principle is mainstreaming. This means that if I am travelling anywhere with Mary Ann, I do not continue through the front entrance while she has to go via the freight elevator or a back entrance.

 

A shocking example of the lack of mainstreaming is prize-winning, Canadian-born architect Frank Gehry’s much-lauded Guggenheim Museum in Bilbao, Spain.

 

See: https://www.guggenheim-bilbao.es/?idioma=en

 

Getting into the Guggenheim

 

As you approach the building, set in a sparking sea of light-coloured treeless plaza (very hard for older eyes to adapt to this high level of glare), you face a daunting array of steps down to the building’s lower-level “front door”.

 

Entry stairs, Bilbao, 2007

 

 

And an equal number to the building’s lower level riverside walk.

 

 

Stairs to riverside plaza, Bilbao, 2007

 

If you cannot manage steps, a hard-to-find interior elevator awaits you. But you have to ask where it is. It’s clearly the “second-best” entrance.

 

Not for all people

 

When I questioned the Museum staff about this separation, one said, “Take it up with Mr Gehry.”

 

I replied that in my country and Mr Gehry’s, this sort of approach would be illegal, given federal government accessibility policies and regulations. The Spanish museum guide had nothing more to say.

 

I believe it’s a serious problem, socially and from equity perspective, however, as it makes the person who cannot navigate the steps “less than” an able-bodied person.

 

I was thrilled to read that Ethan Kent of People for Public Spaces (PPS) calls it the “Hall of Shame”: https://www.pps.org/great_public_spaces/one?public_place_id=827

 

Continuous Accessibility

 

The second principle is continuous accessibility. This means that a person with mobility impairment (or any disability, for that matter) should be able to enter, use and exit a place or a facility with minimum amount of inconvenience. To get around with ease and without confusion. It’s all very well to be able to go to a so-called “accessible” restaurant, but if the restrooms or the bar are inaccessible it hardy makes for a good night out.

 

Community engagement and disability

 

Over the years, I’ve found that our engagement processes often ignore the needs of people with disability. Yet we forget that a high proportion of the population has a disability at any given time – even if it is a broken foot or temporary vision impairment. Making processes – and the places where they occur – accessible to as wide a group as possible is an important equity consideration in any engagement exercise. It’s also a way of demonstrating commitment to listening to everyone’s voices.

 

There are no hard and fast rules and many people prefer one-to-one discussions. We need to seek context-specific advice from advocacy groups.

 

It is critical that, in approaching the issue of how to make engagement processes accessible to people with disability, we do not imagine that all people with disability are those with visible disabilities (such as wheelchair users). Understanding the complexity of disability, in the first place, can help us as practitioners to be less blind to “invisible” disability and therefore target our engagement processes more effectively.

 

Short summary of engagement suggestions

 

The suggestions in this short summary may be of help to you. Click here: Community Engagement People with Disability

 

Comments welcome!

 

When you get right down to it, barriers are barriers, however they appear. I’d welcome comments from those more expert than I am so that we can improve all our engagement processes for all people.

2 Comments

  1. Wolfgang Haufe
    Posted December 1, 2009 at 12:47 pm

    You talk about the difficulty with accessability at the Guggenheim.
    As I am going to Bilbao next year (I’m using a wheelchair) can you possibly give me a useful website about places to stay and places where I can go.
    Thank you!
    Cheers, Wolf

  2. Posted March 11, 2010 at 9:23 pm |

    Dear Wolf, I am sorry that I missed your comment amid so much spam. Many apologies. I am very sorry that I do not know the answer to your question. I just took a bus there for half a day.
    Hope you have a good visit and love to hear YOUR comments. Wendy

Remembering Mary Ann Hiserman

20 June, 2009 at 8:08 pm

 

My friend, Peter, the local real estate agent, came over the other day to see how the building was coming along. He’s been cheering us on, especially during the storms and floods. I found a plan and we walked around the building site.

 

All on one level

“Great that it’s all on one level,” Peter smiled, pointing to the ramp on the drawing.

 

We’ve been struggling to work out where to put the ramp, as, for neighburly reasons, our house is not located in the most convenient spot. We’ve been grappling with this for months!

 

Annotated drawing with ramp 011208 for Steph Z

 

“Retirement housing”, I whispered, but I was thinking of my architect friend, Mary Ann.

 

Mary Ann Hiserman, 1979

This house is for her

Had she still been alive, this house would have been for her, with its elegant wheelchair-accessible ramp and spacious turning circles.

 

We’re not planning a retirement in wheelchairs. But you never know.

 

At least we know how important accessibility is.

 

When I was teaching at Berkeley in the seventies, I had a teacher myself, a young woman who was a wheelchair user: Mary Ann Hiserman. She died at 49 after a remarkable life of activism.

 

She transformed my life, teaching me by example and direct experience what I know about accessibility and Universal Design.

 

Mary Ann Hiserman was the first wheelchair user to graduate from the Berkeley Master of Architecture Program and one of the first wheelchair users to become a licensed Architect in California. She was an expert on disabled accessibility codes and a tireless advocate for accessibility rights. She worked from 1979 until her death in 1997 and wasresponsible — more than any other person — for the evolution of physical accessibility on the Berkeley campus.

 

Long before it was mandated or fashionable.

 

Mary Ann reminded me…

Mary Ann reminded me that an accessible environment is one that’s comfortable and convenient for all. And, when we think about sustainability in our housing, public spaces and buildings, the ageing and increased disability of our population must be a major consideration. Sure, we’re living longer, but many are living with a disability.

 

In her capacity as campus access coordinator, Mary Ann saw that all campus buildings at Berkeley met handicapped compliance codes. She coordinated the Chancellor’s Committee for the Removal of Architectural Barriers and was an access consultant for two local municipalities.

 

Mary Ann spent nearly her entire academic and professional career at Berkeley, was a member of the staff since 1977 and received both her BA and master’s degrees in architecture from Berkeley.

What a woman she was!

 

Unable to walk and severely crippled by polio and childhood arthritis, she nevertheless drew and painted beautifully, traveled widely, campaigned furiously for the rights of people with disability and for accessible environments. And yet she could not walk, dress herself, cook or perform basic hygiene activities without an attendant. She needed five hours’ of attendant care a day.

 

When Mary Ann left me in a borrowed wheelchair in a so-called “accessible” Berkeley park for an afternoon, I was in tears when she returned. Half a dozen people had come up to pray for me, offer access to miracles and speak to me as though I was a child.

 

Ws self handicapping 1978

Self-Handicapping, Berkeley, 1978

 

This “infantilizing” experience reminded me of how the able-bodied members of our community make the rules and define the priorities. The story of our lunch in a Reno casino is apocryphal. I screamed back at the waitress who asked “what the wheelchair wanted for lunch” and Mary Ann just smiled.

 

It’s not always easy building an accessible house in the bush. But it’s not impossible, either. Our house is a metaphor for the values we hold true.

 

And accessibility, honouring the memory of my fearless friend, is one of those values.

 

For photos and stories about this remarkable woman:

 

https://content.cdlib.org/view?docId=kt2c60199h&chunk.id=c000022&brand=oac

 

And here’s our ramp. Finally!

 

Front ramp 0312

 

 

It’s so convenient.

 

And every time I walk up the ramp, I remember my courageous, beautiful friend, Mary Ann, and our wonderful times together!