Imagine this. A place where inclusion just happens.
I imagine it can be this way in elementary school classrooms, where children have not yet learned to judge those with differences. That would be beautiful to see!
I wish it worked as well for adults. Perhaps it does, somewhere. I see the media spreading the stories of high schools electing prom queens with disabilities, or football players with autism being allowed to play on the team for a day…. nice stories, but I always wonder what their lives are truly like, once they leave school.
In my 30 years of being intimately involved in the lives of many adults with disabilities, in several states from one coast to the other.. rarely have I seen real inclusion while out in the community. And I really really really want to see it, and I want to believe that it is happening.
Instead what I DO see is planned efforts to bring people with disabilities into the community. In grocery stores. In churches. I see them with their support workers, walking around the mall. Present in the ‘community’ with typical people, living parallel lives.
and I see ‘typical people’ make real efforts to be extra friendly to them… for a little while. Then they turn and go on with their conversations that they were having with their typical peers. They leave work with their typical peers, they go to happy hour. They have brunch with their peers at their house on a weekend. They call up and say ‘hey, want to go to the Y today?’. They tell each other their secrets.
And too often, the person with the disability leaves their ‘inclusive’ community activity … their job, their school, their mall exercise….and goes home. They go home to their house with mom and dad, or their group home, or to their apartment where they live alone. After work they go to the YMCA program for people with disabilities. Or their support worker will come over and take them to a movie. People from work don’t stop by or call.
Sorry, for being so cynical. I’ve just met so many lonely people over the years.
I am tired of defining ‘inclusion’ as the process of bringing the people with disabilities into a society that often is just not that interested. It is such oversimplification to say the a person is ‘included’ just because they have spent their day alongside a typical person outside in the community. Parallel lives, that is not inclusion.
I have seen true inclusion. I see it every Wednesday actually. Here on the farm, a place where several people who have autism live. A place that borders on ‘congregate living’, which is supposedly a bad thing. Just like all those other farms across the country that people with disabilities call their home, that are being so severely criticized these days for supposedly being isolating, without choice, and not inclusive.
These people here at Juniper Hill have shown me that there is another way , without really thinking about it at all. And I think their way is better.
And all those typical people that really haven’t thought too much about including people with disabilities into their lives…. they are REALLY missing out!
So I say… Isn’t it time they came to US?
I say ‘US’, because most days I am immersed in a community of people who are not neurotypical. And I say…. Lucky Me! It is my community as well as theirs, because having a disability is not a ticket into the club. These folks around me who happen to have a diagnosis… they are way more welcoming and willing to REALLY include all those ‘typical ‘ people into their lives. There is no judgement here. In fact, these people I am surrounded by, they spend very little time wishing they were ‘included’ in the typical community. They don’t even notice who around them has a disability and who doesn’t.
They do not define people by their disability.
Today was our Wednesday Volunteer and Stop by the Farm Day, that we have every week. The way it works is this: if you want to come to the farm and hang out you have two choices:
You can come at 1030 and work until lunch…. you cut sunflowers, fill birdfeeders, weed, feed animals, clean barns…. mow. Then at lunchtime, everyone stops working, we gather in the kitchen to fix our plate of delicious food that Jose and Carin have prepared, and we go outside and sit at long picnic tables with our good friends… and we talk about the day, what went on in our lives this week, the latest HALO/Lego news, the food, and the weather.
If you did not show up to volunteer at 1030… you can still come. But you must bring your own lunch! You can come to hang out, because sometimes after lunch we go for a hike… or play Bingo, or just sit around and tell stories.
Here is why this is inclusion..
There were over thirty people here today. Seven of us live here. Ten or so people who are part of the autism/disability community showed up to volunteer… so more than half of the people here had a diagnosis….. not that anyone here notices that about each other. Several people here were the staff people for these folks. (Now, I know officially support people ‘don’t count’ as contributing to inclusion, because they are paid to be here. But really, it depends on the support person. Things especially change when you work at the same place for three years. It’s kind of insulting to think that they don’t really count, these wonderful people who have become part of the family).
And who else was here with us today?
‘Uncle’ Harold and ‘Aunt’ Peggy, in their eighties, they are neighbors on the lane for the summer and doing work around the farm
Dylan, the farm hand who makes sure the animals all get fed correctly and that the weeding gets done (OK, he’s my son…)
Rebecca, who found us last year while looking for possibilities for community service. Now she just comes because it’s great fun and folks, and it’s the way she prefers to spend her free time on Wednesday mornings.
Ezra, who is a contractor who is tiling the bathrooms in the top house and who has gotten to know everyone and spends every lunch time with all of us.
Ari, Ezra’s 12 year old son who comes along with her and hangs out on the farm now.
Peyton, the Eagle Scout who is building a shed here as his project.
Peyton’s brother Mike, who helped him out today.
Alison... who is a neighbor that lives in the development across the road and works with one of the Juniper Hill guys on Fridays. It was her day off today, and she was home with her 7 year old son. So she called us up and invited the whole crowd over to her pool.
So the entire crowd, full of Jose’s chili (now that I read this, it sounds a bit dangerous!), loaded into cars or walked over to Alison’s… and swam and sunbathed for two hours.
Afterwards, Alison drove a couple of the Juniper Hill guys back home. Her 7 year old son Daniel had really taken to Michael (as many young Lego heads do)…. and Michael had invited him over here to see his Lego collection. The two of them…. Michael (who is 22 years old and lives here) and Daniel… headed up to Mike’s house at the top of the hill while Alison caught me up on the stories of the day… (I did not go swimming… I grabbed the opportunity to be alone here in a quiet house after a very energetic morning of organized chaos with 30 people).
Michael and Daniel returned 20 minutes later, and Alison and young Daniel left. Daniel went home with one of Michael’s Lego men, just because Michael loves to give presents to people.
And then everyone took a nap til dinner.
That’s a beautiful, friendly, INCLUSIVE day on the Hill.
Check out these other farm communities across the country where folks with autism live! Go visit! Agricultural Communities for Adults with Autism
What you describe is very close to my ideal scenario. I wish I were over there at Juniper Farm – perhaps one day I will pay you a visit. This post makes the abstract concept of ‘inclusion’ real and concrete – and I so agree with you about what ‘inclusion’ is not. All the best with your work.
Thanks Liz, would love a visit! you and Dylan are always welcome. Yes, inclusion is something I have thought about for a very long time. It’s definitely time to write about these things!
I always love your essays – keep it up, it is a great encouragement to all of us.
I am sharing this with the entire Bittersweet staff.
Thanks Vicki! I miss Bittersweet… hope to make it out again for a visit one of these days!
I posted your blog post to this discussion on Facebook. https://www.facebook.com/thinkingpersonsguidetoautism/posts/612139778827353
I am a parent, searching and reading for what might be “out there” for people with autism in ways of support. The “inclusion” in schools is not real. It ends when school ends, as you mentioned.
I wish for more and hope for more with my son, and yes, it requires some planning to make that happen.
Thanks Dixie! I think about ‘inclusion’ every day… and the conversation is really picking up this year. It is so much more complex than many people make it….
What a truly honest inspiring commentary!! From a grandmom with two severely physically handicapped young friends ( since childhood) and 2 autistic loving grand sons age 13 !! Thanks, IRM
Sent from my iPad
Thanks! Glad that you found it inspiring… I often feel that my view on this may sound very jaded and negative since I disagree with the very public general opinion about inclusion… I appreciate your comment!
Great essay, Diane. My sentiments, exactly, about real inclusion and the loneliness people (including Michael) can experience.
Thanks Susan…. guess we will all just keep on working on this, right!?
I am sorry I missed this article the first time around but so glad I found it today. AACORN Farm in Michigan would very much like to bring your version of inclusion to Kalamazoo. Thank you for inspiring me.
and WE are excited that we have so many people working across the country to make this type of life a real option for folks! Best of luck with AACORN Farm!
Great piece! I’ve sent it to the ac-aa list. The link at the end isn’t working. Try this: http://ac-aa.org/
Beautifully told. I’ll re-post on the LTO Ventures Facebook page and the listing I have for JF on our website. “Isn’t it time they came to us?” Exactly. In marketing we call it “push vs pull.” Forced integration into scattered site settings – “push” – is too often just another form of institutionalization. It is predicated on the notion that one’s NT neighbors will open their minds and hearts and doors just because of proximity. “Pull” tells us that when you organically create something desirable and welcoming, the people who have the open minds and hearts will choose to be part of it. Krista Mason at Benjamin’s Hope in Michigan made her dream a reality and when she opened her doors 1,000 people from her small community made it a point to show up.
Oh Mark, I LOVE your comment…. and it’s so true. Inclusion happens so naturally, ‘When you build it….’. Benjamin’s Hope sounds wonderful. When can we (ac-aa) get together again as a group…. !? There is so much we can accomplish together, maybe Bittersweet will have us again?
Vicki and I are working on some next steps for ACAA. Another get together is definitely one of them! I passed along your truly exceptional post to the folks at Autism Speaks. Your words really capture the values that support and inform our efforts to make agricultural community models of many types avaliable to those who want the choice of one. Thank you, Diane!
That is great news Gene! Thanks to you and Vicki!
I just discovered this post while out on the LTO site. Your point about parallel lives not being inclusion is true and it made me cry. My son works along side “friends” all day, then goes home alone to his apartment. When he was in high school, he spent all his time alone. The phone didn’t ring with invitations to go swimming or to a party. No one who wasn’t being paid ever called and asked him to do anything. I keep telling myself it will all be ok, because otherwise I have a hard time getting through the day.
So sorry Susan! Inclusion is so much more complicated than people think! I do think that a good way to really feel included is to form a ‘community’… there are probably so many others out there and local to you that are feeling the same way…. it takes time, any community like this is awkward at first until people begin to feel ‘safe’. It sounds like you are making some connections with the on line folks… good luck with everything!