Parents As Pioneers

It has been my privilege to work with the parents who are the visionaries behind Abundant Life Cohousing for the past 9 months.  It has also been exciting to see the energy this possibility has generated with other parents of children with Autism.  Over 35 people have come to two Cohousing 101 events!  We are inviting all interested folk to join us for a Getting it Built  workshop on Jan 18 – 19 .  This workshop is very much designed for explorers . . .we want you to come so that you have the information you need to determine whether this is a good fit.   For more information checkout Abundant Life Cohousing and register here for the GIB Workshop. Enjoy these reflections by Kevin Wiebe one of fathers committed to this project.  

“As I attended the National Cohousing Conference in Portland last year, I came in as a cohousing neophyte. A pervasive theme of the conference was the question of how we can make cohousing work for a broader spectrum of the population. In particular, I was excited to meet up with people who, like me, were exploring how cohousing can include people living with disabilities.

I attended the conference as part of a fledgling team, Abundant Life Cohousing hoping to build a community in Calgary, Alberta. All of us on the team have children who are impacted by Autism Spectrum Disorder (ASD) or a similar disability.

As individuals, we had been independently exploring long-term housing solutions for our children. For too many parents of children on the spectrum, the long-term plan is too outlive their children. We knew that this was not realistic.

We had learned about available housing options. My own son was offered a place in an apartment with one other roommate on the spectrum. In Alberta, we are fortunate that, for now, the provincial government will fund staffing for this type of arrangement. I am confident that under these circumstances, my son’s physical needs would be met reasonably, if we could be certain that staff acted with integrity.

But my son’s entire social universe would consist of his roommate, who would likely have as much trouble creating social interaction as my son; paid staff; and ourselves, as often as we could visit. As much as people with ASD struggle to create community for themselves, the majority of them desperately need it and want it. Research in Canada indicates that people with ASD experience loneliness and isolation at 2.5 times the rate of neurotypical adults. Much as there is an epidemic of loneliness in the society at large, how much worse is it for people living with disabilities?

We are also concerned about the standard of care our children might receive in traditional housing for disabilities. There are lots of people and places who do great work providing care for adults with disabilities. But there are too many situations where people with disabilities are vulnerable to abuse, sometimes unable to recognize the abuse for what it is, sometimes unable to advocate for themselves, and sometimes isolated from people who will take them seriously when they speak out. American statistics indicate that people with disabilities are seven times more likely to experience abuse compared to people in the general public.

We are increasingly convinced that cohousing meets the housing challenges that our children will face through their adult lives, and so we are planning a community where “neurodiversity” will be a core value. We anticipate that about 20% of our population will be people who are living with cognitive disabilities. Some, like my son, who are in need of full-time supervision will be housed in units for individuals or roommates with space for staff – not unlike the apartment arrangement that is currently being offered to us. But this unit will be situated in a community that includes:

• my wife and myself, so that we can visit with him often

• families like ours, who also have children impacted by cognitive disabilities, who know and understand what ASD looks like, who can provide support, and who trust us to provide support for their children in return

• people with ASD or other disabilities who can live and work independently, but who choose to live in an autism-friendly environment so that they be supported in finding community

• people who believe with us that cohousing helps to meet the needs of a vulnerable group in our society, and who choose to live with us to provide social infrastructure

For our son, a community like this provides him with a much richer social universe. There are more people with whom to regularly interact, and so a better chance that he will find people that he enjoys. Since the community is intentionally sensitized to the needs of people with cognitive disabilities, there will be people who will help him learn how to construct his social network. He will have the private time that he needs, but he will also have people drawing him into community whenever he wants it.

Cohousing also provides several protective elements into the daily life of a person like my son. There will be many eyes on him, people who know what “normal” looks like for him, and who can help to redirect him when he pushes boundaries. He will have staff working with him in his apartment, but he will also have family just down the pathway. That means that if staff are seeing something that they do not understand, they have immediate access to coaching. It also means that staff are always aware of their accountability, because the whole community will be watching out for my son.

We recognize that we are doing something new by building a community with such a high percentage of people with identified disabilities, and we still have a great deal to learn. But even if we were not doing this, we believe that existing and developing cohousing communities are uniquely suited to provide places of safety, housing security, and community for people who are impacted by disability, and we encourage all cohousing communities to consider how they can include this vulnerable segment of our society.

– Kevin Wiebe, parent of young man with autism, and future resident of Abundant Life Cohousing