Moving Boulders

In 2011, I was at a conference around disability and inclusion in Toronto.  On the day I arrived, I walked into a shared hospitality room for conference attendees.  There was a young woman at a table by herself, so I grabbed a cup of coffee and sat down with her.

I introduced myself, but she didn’t respond verbally, so we sat there together while I drank my coffee.

A few minutes later, an older woman came in who knew her and joined us.

The older woman pulled out a laminated piece of cardboard that had the letters of the alphabet printed on it.

She introduced herself to me, and I introduced myself to her.  Then she used her hand to guide the hand of the young woman around the letterboard, slowly spelling out an introduction.

We had a nice little conversation, with the older woman alternating between responding herself and guiding the hand of the young woman to respond and participate in the conversation.

Over the first two days of the conference, I noticed how these two women went to sessions together, and how the older woman would spell out answers and thoughts by guiding the young woman’s hands.

It was a new experience to me, and while I’m not proud of it, my perception and understanding at the time led me right into judgment.

I perceived the older woman as some kind of ambitious staff, showing off and manipulating the young woman, who to my eyes, was clearly nonverbal and autistic.

It seemed incredibly bold and supposing of her to commandeer this young woman’s body and essentially force thoughts and conversations that, again, in my limited understanding of the world and autism, clearly weren’t there.

Why on earth would someone pretend like a person with an intellectual impairment could think through a conversation?  And why would they take it to the extreme of typing out fake conversations?

It perplexed me and went against what I thought was the reality of the situation.  I was sure of it:  This was some kind of pushy political correctness.

On the morning of the 3rd day of the conference, however, these two women came into the session I was in.  We all went around the room and introduced ourselves, and the older woman introduced herself as the mother of the younger woman.

I was stunned.  All of my judgment crumbled.  All of sudden, I was no longer witnessing an ambitious staff who was showing off and pretending something was there that wasn’t.  I was witnessing a loving mother doing her damnedest to bring her daughter’s voice into the world.  I was seeing a level of patience and devotion that I couldn’t even fathom.

I spoke to them a few more times throughout the conference and was grateful for the example of both of them.  I started to ask myself how much it mattered whether or not the mother was actually spelling out the daughter’s thoughts.

After all, she was simply helping her daughter participate in healthy and positive conversations.  She wasn’t spelling out “Can I buy some drugs?” or “Do you want to fight?” or anything dangerous.

I left feeling like my judgment of those two was totally misplaced, and with a deep appreciation of that mother’s intention and attention to her daughter’s social presence in the world.

Two years later, in 2013, I watched the film “Wretches and Jabberers” as part of a local film festival.

The movie follows two men, Larry Bissonette and Tracy Thresher, as they travel the world. They are both autistic and use typing as a way of expressing their thoughts. In the first few scenes of the movie, they flap they their hands and pace around rooms and repeat phrases that seemed typically “autistic” to me.   Soon though, they begin typing to each other, and share profound, insightful and relevant thoughts that reveal their underlying intelligence.

My mind was blown.

Up until the moment they started typing, I never assumed that anyone who was autistic was also intelligent.

I thought back to that mother and her daughter, typing out her thoughts, willing her voice into the world as best she could.

A few months after I first watched the movie, Larry Bissonette actually came to Cincinnati for a visit.  We were fortunate to host him at Starfire and 30 people showed up on a Saturday morning to hear Larry’s thoughts on the movie and the world.

Larry told some of his story, and in between typing on his iPad, would stand up and pace, or move his hands or say a few phrases over and over.  He did that a few times throughout the morning, and then would return to typing.

larry bissonette

He and his facilitator, Pascal, told the story of how Larry studied and practiced a sort of mindful, meditative focus that allows him to move his fingers enough to type out his thoughts.

They described starting with Pascal’s hand over Larry’s hand, and over the years, moving Pascal’s hand up Larry’s arm.  Over 20 years later, a simple touch on Larry’s shoulder was usually enough to help him focus on typing.

In the movie, Larry seemed most happy with his painting, which he does in a swirling playful style, using his fingers to create landscapes and scenes with lots of different colors. He showed pictures of his paintings and took questions from the audience.

One of the first questions Larry fielded was if he prefers to communicate with typing or through painting.

I will never forget his response.

Pascal touched Larry’s shoulder, and his body seemed to settle in.  He began typing:

“Painting is like flowing water, typing is like moving boulders.”

I’d never considered before the movie and that visit with Larry that not only were autistic people intelligent, but they were also aware of the struggle of being trapped in a body that didn’t regulate itself the way mine does or that most people’s bodies do.

I, like nearly everyone else throughout history, just assumed that these people were autistic, and that being autistic meant that you were just a person with random behaviors detached and unconnected to human thought.

In a way I considered autistic people almost non-persons. People who weren’t really human at all, but some sort of broken, confusing combination of random actions and behaviors.

That visit and that movie had a big impact on me.

I started to believe that a better, more respectful and hopeful way forward was to assume that everyone had the same degree of awareness, however they showed up.

I also started to question why I needed to have a certainty that someone was intelligent and fully present in order to treat them with dignity.

After that visit from Larry, I went on a sort of “autism apology tour,” telling autistic people I knew that I was sorry if I had ever treated them as if they didn’t matter or understand.

I remember a few people kind of nodding and walking away or giving me some sort of affirming noise, which left me convinced that there are more people like Larry in the world.

How many people are trapped in the social ramifications of autism, surrounded by people harboring these outdated assumptions about them?

Larry’s metaphor continues to be one of the most powerful things I’ve ever learned.

Can you imagine what it would be like moving boulders every day, just to get your thoughts across?  What must it be like to experience a total lack of understanding by everyone around you?

Larry went from being someone who I previously would have completely dismissed, discounted and disrespected to somebody that I think of as a black-belt-ninja-Jedi-master-badass-boulder-buster who has honed and disciplined his body and mind in a way that is deeply admirable to me.

In 2015, I was fortunate to visit a few autistic people in Madison, Wisconsin, and their support staff.  All of these people are learning about this emerging story of autism, guided partly by the work of Martha Leary and Anne Donnellan (Autism: Sensory-Movement Differences and Diversity).

Through that visit, I came to understand some people on the autism spectrum as having more of a physical disability, in that their brain doesn’t regulate itself or the body in the same way it does in neurotypical people.  That dysregulation appeared in the way that we see autism:  repetitive movements in the body, which may be a way of the person attempting to regulate, or in some cases, taking a well-earned rest from the grind of “moving boulders.”

Shortly after that visit, a blog post titled “Why I Left ABA” was published.

Reading it was shocking, linking to articles and videos where autistic people describe scary and abusive methods used on them to control their minds and bodies.

I couldn’t help but contrast Larry’s approach, which he chose and committed to of his own volition, to that of ABA therapy, which is forced upon autistic people, sometimes by their own parents in their confusion and hopes for anything that might help.

To me, it seems to be the difference between freedom and coercion, between safety and danger, and between dignity and degradation.

Over the past few years, I’ve been privileged to hang out with a few families who have started down this new path early in their child’s story.  They are investing in Rapid Prompting Method (RPM) and a brave and burgeoning community of families is emerging here in Cincinnati as a result.

Here’s a 60 Minutes story on the first explorers in this world:

 

And you can check out some samples of the progress people are making here.

They describe it as life-changing.

Young autistic people speak through their letterboards or tablets, typing out their thoughts, slowly “moving boulders” and showing us a brighter and better future.  They talk about hopes and dreams, and they describe the hurts they’ve experienced.

Some of them describe their time in ABA as a form of torture.  Some of their parents have expressed a deep regret in subjecting their children to it, even for a few years, not knowing anything else was possible.

These families still face incredible headwinds. They are footing the bills for RPM themselves because, unlike ABA therapy, RPM isn’t covered by insurance.

And they tell stories of being discounted by therapists and teachers and other social workers, who consider RPM to be a form of voodoo, or, like I initially did with that mother and daughter in Toronto, a fake kind of exploitative puppeteering.

Their judgment is rooted in the same place mine was: in the faulty and mistaken social assumption that autistic people are unintelligent, and in the related and even more disturbing cultural assumption that it is OK to ignore or treat people we perceive as unintelligent poorly.

I recently sat down with an impressive young man who I have come to admire deeply.  It’s impossible not to notice how he moves around a room, with a quick slight dance.  He sometimes twists a length of string in his hand.  His eyes look around the room while we chat and he doesn’t speak in the way that most of us do.

But the words he types are clear and critical for us to hear.

He is concerned for the future of our planet and hopes each one of us can find small ways to make a difference before it’s too late.  He, like Larry, he is deeply intelligent and thoughtful.  Also, like Larry, he faces a world that judges him from the outside, and is quick to ignore him.

Somewhere in one of our conversations, we talked about faith and I asked him if he practiced any particular religion. He responded by typing out that he places his faith in people truly listening to each other.

He then typed “I have noticed a connection between people who easily believe in God, but have a very hard time to believe in me. LOL. ”

I was struck by how profound that insight was, and also how heartbreaking it must be for him, and what a tragic loss it would be if we can’t find a way to create the space for this brilliant young voice to be heard.

In one of our conversations, he typed to his mother “This guy gets me.”  I don’t think I’ve ever had a better compliment.  I’ve worked hard to let go of my own misperceptions and assumptions, and it’s an honor to have that recognized by a black-belt-ninja-Jedi-master-badass-boulder-buster.

Larry-Bissonnette-advice

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Timeless Way of Building – Italics Only

Christopher Alexander’s book, The Timeless Way of Building, is one of my very favorites.  It is primarily seen as a book about architecture, but is also a book about a way of life.  Alexander wrote the book in a beautiful way, with one or two lines in italics that sum up the general principals of his thinking, followed by un-italicized prose that dives deeper in the specific applications to architecture and design.  He suggests reading the italicized parts first, then going back and re-reading the entire book, which can be accessed in it’s original form, but digitized, here:  https://archive.org/details/TheTimelessWayOfBuilding/page/n2

At the risk of breaking up the pattern, I was interested in a version that was italics only, for ease of reading, and so converted the PDF to the following document, and edited out the un-italicized portions.  I told a few people about it and they asked if I could share it and there seemed to be interest, so here it is!

In the transition from PDF to text, some of the translation ran into trouble, so I reformatted any typos that popped up.  In particular, commas were translated as “y” or “-“…and there were many cases where “p” was interpreted as “f.”  I think I’ve caught all of these, but it is possible a few remain.  If you discover any of these in your reading, please email me at tim@starfirecouncil.org or teevee999@gmail.com and I’ll make the edits.  There are also a few italicized lines that I edited out as they referred specifically to pictures in the book, which were confusing as I read them.  I think there might have been only 3 or 4 instances of this and I left any that referred to pictures but also contained narrative included.  If you have better ways of thinking about this or suggestions  – add the pictures? – that is welcome, especially if you are willing to work on it.

Enjoy and please remember that this is no replacement for reading the whole book.  This is simply a way to get started into it and I created this in deepest respect to Christopher Alexander and the content, which never is far from my mind as a constant inspiration.

Here is the link to the PDF:

Timeless Way Italics Only

enjoy!

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Cincibility has moved!

After almost a decade on WordPress, Cincibility is moving over to Starfire’s website. We are so grateful to all of our followers who have kept up with our story over the years. It’s been a long journey, and we hope you’ll stay in touch. We’ll share updates from our blog in our newsletter, you can head to our home page to subscribe.

Lots more to come, including new podcasts with stories told live at our BYOB(reakfast) and new conversations, videos, and events all centered on the possibilities of more in people’s lives.

To find the new home for Cincibility, head over to www.starfirecincy.org/cincibility

Cheers!!

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What’s a conference when it’s not a conference?

…It’s an UNconference!  YOU and everyone else set the agenda together. The first night is the kick-off, starting with dinner — followed by us creating the schedule together by filling in one big blank canvas, like this one:

DSC_6810

…What the next two days of the conference will look like is unknown! Well, not entirely unknown. We DO know there will be dinner each night, and lots of people from around the city sharing their gifts and passions. The rest depends on you taking the chance to be part of the most unique 3 days you’ll have in Cincinnati all year!

Check out our website for more:

http://www.starfirecincy.org

 

Oh, and  to an archive of our interview on 91.7 WVXU – you’ll hear Tim, Leah and Megan give a complete rundown of the ideas behind the 3Day, a few logistics, and a sneak peak at some of the presenters we know will be there.

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Safety. Starfire Story Series 05 part 1

“We’ve learned that true safety comes from a form of love or a form of affection and care. It’s a shared obligation, it’s a reciprocal relationship.”

In this audio you’ll hear a conversation with Tim Vogt about the subject of safety, love, and the ‘spell of certain magic words.’

Listen here:

 

TRANSCRIPT:

Katie: Can you start us off and talk about what does safety get sold as in the service system today?

Tim: They’re selling us an idea of safety that nothing will ever happen to us. And what they’re doing is they’re trying to provide a cover for families and communities to say, “Great you’ve got it take care of it thank you.” We just kind of believe that there’s a balance. That there are some services that can provide some degree of safety. But we just don’t believe that that’s the only form. And that’s where we have the question of well, “Who’s got my back? Who’s making it more safe for me and with me?” And the thing we think about at Starfire it’s a great quote is that safety comes from the presence of many capable, caring glances. We need to be in the presence of a bunch of people that know us and see us and love us. And that’s

Actually what keeps us safe it’s not the locks on the doors it’s not the security systems it’s not the management requirements of the Medicaid system or the policies of the group home or the day program or the segregated farm that says they’re going to do this that or the other. None of those things actually provide true safety.

K: Yeah, I mean if we all wanted to live in the safety that people with disabilities have to live in, which is the safety of basically the State and policies, it would look like a military state. You know, it would look like people going, patrolling up and down the streets and us having to lock our doors at a certain time and all of us being sort of trapped in this really sterile, scheduled out environment and nobody would want that.

T: It’s always safer with more people.

K: Yeah.

T: So that’s the design of Starfire’s work that’s intentional. That true safety comes from a form of love or a form of affection and care. It’s a shared obligation, it’s a reciprocal relationship. I look out for your best interest because I care about you. And you look out for mine because you care about me.

K: So… in front of me is a book called christmas and purgatory and I’m going to read a quote. It says, “Some of mankind’s most terrible mistakes have been committed under the spell of certain magic words or phrases.” This book is filled with graphic and disturbing pictures of an institution. I’m bringing this book into the conversation because it shows us the worst of mankind of what can happen when we follow the lure of ‘safety’ over community.

 IMAGES FROM CHRISTMAS IN PURGATORY

 

T: Well, the book Christmas in Purgatory has always been powerful to me because it is, as you put it, graphic. And it’s also kinda interesting, at least from my perspective, some of the pictures rhyme with the pictures I see even today. In services for people and in the form of our services. It’s not as bad, so that book shows people naked in rooms with dozens of other people without any kind of toileting or any kind of cleanliness. It’s a really horrific kind of doral kind of essay on what was happening to thousands and millions of people with disabilities. But if you took just the form of it, people in rooms without much purpose, you’d largely see that very much alive today. The same pattern is still happening in day programs and workshops and group homes for people with disabilities. That’s really, I think very dangerous because it’s almost like it’s repackaged, it’s the same pattern but it’s got some new color to it and then we buy it. We’re giving them a version of the Christmas in purgatory support system which is here’s some walls that will largely keep out the monsters that we’re telling you that live outside of here but they’re still sitting there in a room with each other doing nothing that leads them outside of those walls. We’re not in the presence of these safe, caring, loving glances. We are at the real kind of mercy of the wardens of the institution, so to speak.

K: So are you saying that we haven’t designed anything really new out of the institution? We just kinda designed smaller, prettier institutions when we closed down places like Willowbrook?

T: That’s my perspective.

K: It seems like the intentions are maybe better this time around.

T: I think we are evolving. Like I do think that people are trying to recreate somewhat of a better mousetrap. It’s just still a trap and now we’re stepping into a space in time where our our laws are starting to say, ‘Well are these kinds of places the same as the institutions?’ and people are largely saying, ‘Yeah, they are in function and in form.’ So it doesn’t matter the intention of whether or not, it’s still based on a design and that design is still based on some assumptions that people with disabilities are a them, are a collective group of people. And that’s a dangerous thing because then everybody’s identity is lost. Most people with disabilities that I am aware of and hear about and talk to are in real danger of having no purpose as a citizen of their community. They are simply a client of nonprofits and governmental services and their entire purpose is lost to the world. And I think that’s a big danger that I think Starfire raises and says: ‘What about this person’s purpose? Why was this person born? And what’s the role of the family in a community to discover that, and what’s the role of the support system, service system to nurture that experience?’

And I don’t think that it’s bad to have a collaboration between service system and families and community. It’s for me, from my perspective, it’s over weighted toward just the services system and then a person with a disability almost gets kind of sent to this place or places that are gonna serve them and if it’s just to captivate them and keep them safe in our building, the shared purpose becomes clienthood. It becomes we all are in this building because we all have some sort of need that’s been defined by our medical records or our doctor’s evaluation. So volunteerism could be we discover purpose together as citizens and that’s what would build that kind of safety net of relationships that well I look out for you because I care about your purpose and I care that your gift to the world would be missing if you weren’t here.

The biggest danger from my perspective is nobody’s talking about this. We say “it’s their choice to be segregated” and in that case let ourselves off the hook for even addressing the complexity of the issue. I think that’s why Starfire’s story is so powerful. It’s just more honest. We’re talking about the complexity of things versus selling everybody on the idea that we can solve all your problems.

The most egregious examples I have of people with disabilities being in trouble is where there were very few people looking out for them. There was a woman who was being prostituted. She had $100,000 a year in services and the services couldn’t stop her from being prostituted. Another person I know lit a cup in fire in his group home and spent two years in State Penitentiary. He again, had a big waiver, big bunch of money behind him that  the service system and a bunch of nonprofits, including Starfire. Both these cases lined up and said we’ll keep you safe. We had three people that I always kind of paired together that came to our dances and our outings. One young man’s mother shot him up with morphine then shot herself up. She’s still alive but she’s in jail for the rest of her life and her son is dead. Another young woman would come to our dances and our outings and her mom laid her down in bed and shot her in the head and shot herself in the head and both of them are dead. Another mother stabbed her daughter who was autistic and then stabbed herself and set the house on fire. All three of those people came to our outings and our programs. They all participated in our dances. They all went bowling with us.

And I’m sure it’s more complicated than any of us know. But my question has always been did we fail them by not bringing in more people into that story? By telling them that our dances and outings were gonna answer all of their hopes and dreams and fears, did we take away the complexity and did we let ourselves off the hook for actually inviting in those capable glances that would have said, “Hey it seems like you’re not doing so good, could I spend an afternoon with your daughter or could you and I take a walk and just talk about it?” How do we grow a safety net of relationships – versus services?

K: A safety net that looks more like love? Outside of the service system, outside of a volunteer saying, “Let’s go on an outing together and sort of not taking them as seriously as a true friend. When families can see that, ‘Hey my son or daughter is loved,’ that creates safety.

T: I think that if I fear being rejected, it’s largely because I’ve had that experience before right? And we know that people with disabilities are rejected a lot of ways throughout their lives. So are their families and if we don’t acknowledge that. Then we ask the question of how do we mitigate against that rejection? How do we build less rejection? That would be really good work but to simply say we’re gonna protect you from ever having to worry about rejection doesn’t actually get at the antidote to rejection. It just takes away the possibility of the hurt coming.

K: Let’s address the idea that people with disabilities often need support. Not every person with disabilities has the same needs or challenges but across the board there is a need for support that might look like a staff person, right? I think that what we’re saying here is not to say that someday that the community will replace every need for the service system. Is that right?

T: I don’t want anyone to ever think that a friend is going to replace paid support or a friend’s gonna replace family. However, we can’t think the service system is the sole system of support. We have to believe that some people can learn ways to support each other outside of services. So for example, if someone needs a feeding tube, that might lay outside the technical expertise or even something that would be unsafe. We wouldn’t want me to change someone’s feeding tube, I could easily cause an infection or harm to that person. However, there are lot of things we could do together that don’t require me changing a feeding tube. The problem is services own every aspect of a person’s life. I always ask families, ‘Were you trained to have a kid with a disability or did they just fall into your lap?’ They say we just learned. So family members are just citizens that learned the role of caregiver, so that means other citizens can learn. I just don’t like discounting the possibility that citizens can learn these things. So services have to be more creative and individualized so they can consider each individual’s design question. What is the design question that arises from this person’s life? Or their purpose. How might we help support facilitate that is an individualized design question? They also have to assume that someone from the community should and could be in this person’s life in a variety of different ways and the service workers have to own their own limitations.

K: One of the last quotes here in the Christmas at Purgatory book says, “The greatest discovery of my generation is that human beings can alter their lives by altering their attitudes of mind.” I think that is a big part of what we’re talking about. If we keep the same mindsets we’re gonna continue to pump out the same story, which is an old story of people with disabilities.

T: I think people can do what they want. If they want to recreate the outings or they want to recreate day programs. It’s a free country, right? Nobody can stop them, and yeah there might be people that say that’s a great idea for me or my family member. I mean those just aren’t the people we’re working with. We are working with people that say, “I thirst for a future and I believe in that future, and I’m willing to work with you.”

K: How should people change their mindsets about safety? What is the sort of underlying thing you think that needs to just shift?

T: I think they just have to start getting out there and meeting people. I think they have to start really believing that there are about thirty people out there that are going to be their future best friends that they haven’t met yet. And the only way to meet them is to start meeting them, and then the only way to get them to be best friends is to start investing in those people. And then just believe in it and act like you believe it and sure enough it becomes true.

K: Cool. Anything else?

T: It’s complicated isn’t it?

 

This story is part of our Story Series, “Work.” Subscribe and get a new story from Starfire in your inbox week by week!

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Work: Story Series 04 re-cap

Our most recent Story Series about “Work” set out to answer the question:

“What does it look like when people with disabilities are connected to meaningful employment- in the community?”

We broke out the question into a series of 6 parts, addressing the various aspects of work throughout.

In part one, we drew from the experiences and design skills of Christopher, Starfire’s employment coordinator, who set the tone by breaking down the overall vision we have around employment for people with disabilities:

“Everyone blows their first job. You got to learn. Its okay. What do you do? Do you never work again? No. lets get another job and regroup and like go at it again now that we learned something. We’re going to be able to design a better role next time.”   – Christopher Kubik

In the next part of the series, Jack took us into a day at his job at J&N, where he works in a large warehouse alongside people like Phil. This story is one about building relationships with co-workers as much as it is about matching the right skill sets to the employer’s needs.

We took a pause in part 3, to remember why it is so important to design individually around every person with disabilities and support them in finding places in the community for work. When talking about employment, it’s important we don’t forget the potential pitfalls of devaluation and abuse that can happen when we create isolated, segregated pockets of people with disabilities.

Next, in part 4 we provided a link to our short and sweet e-book “6 Proven Steps to Finding a Job”  – that was downloaded over 100 times in 2 weeks! We hope this was a useful glimpse at the behind-the-scenes at Starfire, and informed ways you might do similar work wherever you may be.

We wanted to make sure that this guide was practical, and that we could back it with some of the stories we’ve seen as well. That’s why in part 5  we broke down how Jenny was successful at finding a job that fit her goals, using some of the same steps from our ebook.

Finally, we wanted to address any questions people had around this topic, and so we gathered around a table to discuss more of the nuances of employment. For part 6, we went LIVE on Facebook, and held an open conversation on the topic for anyone to join.

Now we’d love to know what questions you still have, what came up for you during this series, and what might be useful for next time. Get in touch and let us know! 

Stay tuned for our next story series on “Safety | Stretch | Danger” – Subscribe to our weekly newsletter

And if you’d like to learn more about Starfire or get involved, head over to starfirecincy.org

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Remembering the ‘Boys’ in the Bunkhouse – Four Years Later

This past December, the Trump administration announced that they will be revoking 25 legal guidance documents that interpreted and explained a wide range of federal laws, including a guidance letter written in 2016, protecting the civil rights of people with developmental disabilities. The administration stated that these letters “improperly went beyond explaining existing laws, and instead essentially created new rules.” We don’t know quite yet what impact this will have on our work in the state of Ohio to move more disability services toward integration, but it is assuring that the existing legal framework is not impacted by the letter’s revocation. Certainly, it also doesn’t change what our mission is at Starfire.

In any case, attention to this letter by the Trump administration took me back to this story published almost exactly 4 years ago by the NY Times:

The ‘Boys’ in the Bunkhouse: Toil, abuse and endurance in the heartland. 

The story exposed the abuses done to a group of a few dozen men who were employed at a Henry’s Turkey Service, a turkey plant in Iowa, for more than 30 years:


“Their supervisors never received specialized training; never tapped into Iowa’s social service system; never gave the men the choices in life granted by decades of advancement in disability civil rights. Increasingly neglected and abused, the men remained in heartland servitude for most of their adult lives.”



The story is horrifying to read. The “bunkhouse” where they lived conjures images of Willowbrook, though almost 50 years after Robert F. Kennedy described that institution as bordering on a “snakepit,” and as “less comfortable and cheerful than the cages in which we put animals in a zoo.”

One man with developmentally disabilities was forced to work while he received chemotherapy treatment, “I threw up at my house and I threw up at work,” the article quotes him saying. Another got handcuffed to his bed at night. Another died getting lost in a snowstorm, trying to escape the only home he had. The house was so cockroach-infested it made eating an indigestible task, “many men ate with one hand over their plates to block the roaches falling from the ceiling.” They rose at 3 a.m. for work, enduring what most could not imagine for even a day, and for 3 decades of their life took home sub-minimum wages for their efforts.

I read the article while pregnant with my first daughter and the images were so graphic and heartbreaking that it took me weeks to finish the story. I found myself asking again and again….How could this have happened in 2014? Almost forty years after deinstitutionalization in our country?

… Iowa’s governor at the time, Chet Culver, acknowledged that “every level of government has failed these men since 1974.”



If there is to be any consolation, the horrors these men went through informed and strengthened the call for radical changes in the disability service system across the country. The story of these men from Atalissa was the spark that brought flame to a deeper issue: the ongoing segregation of people with developmental disabilities in the workplace, home, and in day programs. While abuses like these are an anomaly, the root cause – isolation and segregation from community – was still alive and well in our country.

The same year the story hit newsfeeds (one month later to be exact), the Obama administration expanded efforts to crack down on “unnecessary segregation in employment systems” for people with developmental disabilities. President Obama then took further action with an executive order to raise the minimum wage to $10.10 an hour for workers employed under certain federal contracts. The message was that people with disabilities rights are being violated, and that Congress and the nation must do more in accordance with the Americans with Disabilities Act (ADA) to support people with disabilities in the community, rather than in the forced segregation of institutions. 

Soon states such as Ohio or most recently in Utah, became the subjects of class action lawsuits led by civil rights organizations.  The lawsuits followed the guidelines set forth by the 1999 Supreme Court ruling Olmstead, or Olmstead v. LC. This civil rights decision was based on the ADA, and stated that people with disabilities have a qualified right to receive state funded supports and services in the community rather than institutions when the following three part test is met:

  1. the person’s treatment professionals determine that community supports are appropriate;
  2. the person does not object to living in the community; and
  3. the provision of services in the community would be a reasonable accommodation when balanced with other similarly situated individuals with disabilities.

As Olmstead moved throughout the country in the form of lawsuits, a legal guidance document was written in October 2016 by the Obama administration. This is the aforementioned document that was rescinded during the announcement by Jeff Sessions.

Here’s an excerpt:

A core purpose of the ADA is to “assure equality of opportunity, full participation, independent living, and economic self-sufficiency” for individuals with disabilities. The integration mandate of Title II of the ADA is intended to allow individuals with disabilities to live integrated lives like individuals without disabilities, including by working, earning a living, and paying taxes. The civil rights of persons with disabilities, including individuals with mental illness, intellectual or developmental disabilities, or physical disabilities, are violated by unnecessary segregation in a wide variety of settings, including in segregated employment, vocational, and day programs.

Of course, especially if you’ve been following our blog for years, it’s true that Starfire’s shift came before any lawsuits or pressure from the state. We were fortunate to come to our own realizations. But while others saw our transition out of day program into an integrated model as too costly, time-consuming, and radical, this clear direction in the 2016 legal guidance document from the White House and the DOJ was a beacon of support for Starfire.

Perhaps the momentum toward integration has taken hold, and many programs, families, and people with disabilities are on their way out of the outdated models that segregate people in facility-based settings. Certainly, forty years after deinstitutionalization and the IDEA, almost thirty years after the ADA, and after far too many days of people’s lives spent in isolation, people with disabilities deserve an all hands on deck approach to moving each person out of institutional living and into community life. We cannot forget.

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Work. Starfire Story Series 04 Part I

Our newest story series will focus on work. What does it look like when people with disabilities are connected to meaningful employment – in the community?

Listen to Christopher Kubik speak on the topic of integrated employment and ways he matches people with disabilities and employers so that they’re both the right fit.

 

TRANSCRIPT:

Christopher: For me personally, and I may not have enough experience to see this clearly, but I am very, very drawn to doing things that people thought were impossible. And for many people we work with their families or themselves personally were told at a young age, ‘you’ll never have a job.’ ‘You’ll never…’ A big long list of ‘you’ll never’s.’ That’s what gets me out of bed in the morning. 

So this summer was rough for us. A lot of people lost jobs. Because it’s their first job and you blow it on your first job. I remember being fired from the dairy corner down in Newtown.

And a lot of times the people we are working with, they’re adults that have not had a real job out in the community, that has nothing to do with disability, a typical job. Maybe real is a bad name.

Everyone blows their first job. You got to learn. Its okay. What do you do? Do you never work again? No. lets get another job and regroup and like go at it again now that we learned something. Were going to be able to design a better role next time.

Katie: Sometimes when you hear about employment with any marginalized group, it can create this deficit umbrella over them. “Oh, they’re unemployed so that means that they’re needy in some way.” So when you go to an employer, Chris, that narrative that this is a person who has a deficit, and they need you to give them a job to make their life better. How is that a different conversation through your work?

C: That’s a great question. The only reason we job hunt for people is because they have on their own said in some way, “I’m interested in that.” So we don’t prescribe a job as a solution. If you take it slow, and build it with being known first, then it can really be actually the culmination of who you are. But when it’s rushed and forced for an outcome, it can really backfire and have really long-term damage.

So when we come to an employer we say, ‘Hey, were looking in the neighborhood for opportunities for Katie to work, what do you guys do?’ And then I’ll ask, ‘What are some of the things that you guys are struggling with? Or what are parts and times of the week that suck?’ And then just offer solutions. It’s as simple as that. And then you can think about what if one of the people we are job hunting for can be the person that provides that solution. And what would that look like. And then we introduce the person were thinking are maybe a fit there. But its based on, ‘Will this help your business? Are you willing to have a trail period? Or will you hire this person and we will reconvene in 30 days?’

And talk about what’s working what’s not. What can we shift so it will work long-term. And small businesses, if the team is small enough, that is a really easy conversation. And they’re really open to that kind of experimentation. They’re not married to some org chart that they can’t stray from. They are able to look at the things in between and see opportunities. And that’s humbling to see business be like, ‘Okay, yeah lets try it.’

I know personally, a job has changed my life for the better. Of who I am and what I am capable of doing. And I see that with the people we work with. Their personality changes in positive ways. They gain confidence and are more comfortable in their own skin. This is a normal thing and it’s also shockingly happening with people who live with disabilities. We shouldn’t be surprised by this. What is a job besides the money? It’s people coming together around a  common mission and devoting time and energy in order to get that thing done. And so I think people should be included in that kind of thing.

This story is part of our Story Series, “Work.” Subscribe and get a new story from Starfire in your inbox week by week!

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Happy birthday – times three

The first time we sang happy birthday was right before the gifts. Jessica wanted to open them right away, before the food came. She got a butterfly necklace, a restaurant gift certificate, tickets to a play, a winter vest, and a coffee cup that read, “I love you a Latke.”

The second time we sang happy birthday was at the end of the night, when our cheesecakes arrived and a candle was lit. “Happy birthday dear Jessica,” the 8 women sang in chorus around her.

“The Queen!” she interjected. We laughed and nodded our heads in love and agreement.

“Happy birthday to yooou!”

Then for reasons all her own, Sandy reached over and lit a new candle, on another part of her cheesecake, and with all the willingness and joy that only a table of friends could muster for their friend, the queen, on her birthday, we began the third and final rendition of happy birthday to Jessica.

“And many more!” Sandy concluded.

On the way home from dropping her off that night, my 3-year old daughter asked, “Mama, why did we have to drive Jessica home?”

“Well, because Jessica can’t drive,” I answered.

“But where is her mommy?”

Jessica’s parents both passed away 7 years ago, months apart from each other. Her mom was old, and she got sick I explained. So… she’s gone but now Jessica has other women in her life who care about her, like our family, and all the women who were around the table tonight, singing her happy birthday – 3 times.

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The life she imagined – Kachelle’s story

Kachelle said at first, she wasn’t sure about partnering with Danyetta – or Starfire.

“In the beginning, I was just a little stiff,” she said about her early days working with Danyetta. “I’m not used to people.”

That was two years ago. Today, Kachelle is an active part of her community in Lower Price Hill. Through Danyetta’s support, week after week, she can now say she is building the life she imagined – filled with connections to the art world and opportunities to create with others. And because of her new friendship with Alicia, Kachelle has a job as an “artist in residence” at the neighborhood non-profit, Community Matters.

 

“I don’t think Kachelle realizes how much she means to me,” Alicia said, Community Engagement Coordinator from Community Matters. “I think she has a lot of power. I love seeing her every week. She lights up any time she comes and we’re doing art together.”

 

“I like to help people get together,” said Kachelle. “And I like Starfire and working with Danyetta. I don’t know what I’d do without this.”

Kachelle first connected to Starfire because she expressed wanting to get out of her house more and meet people her age who lived nearby. But her experiences at that time were working in a sheltered workshop, where she said she spent all of her time in the facility.

“I told Danyetta in the beginning that I like to get my hands messy,” said Kachelle. “I didn’t want the paint brush, I like to use my whole hand on the canvas.”

“When Kachelle told me she likes art, I thought about the ‘who’ first, then the ‘what,’” said Danyetta. “I knew Alicia from another neighborhood project I was involved in and reached out. It worked out nicely because Kachelle and Alicia care about the same things, and they’ve formed a friendship.”

Kachelle, Alicia, and Danyetta came up with the idea to create a space for artists in Lower Price Hill to engage, naming it “The Collective” – a weekly artist meet-up in Price Hill.

“We recognize that the word ‘artist’ can be intimidating,” continued Alicia. “So we’ve tried to develop projects everyone can take part in. It’s an opportunity to be creative and be a leader in your community.”

To learn more about why Kachelle’s work connecting in her neighborhood is so important, check out our website. www.starfirecincy.org

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This story is part of our Story Series, “Time.” Subscribe and get a new story from our series in your inbox every week! 

 

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