Some people are not given much opportunity to make friends or be in a romantic relationship.

The Cost of Loneliness  Project  identifies  loneliness as rapidly emerging  to become the greatest public health crisis of our time.

When thinking about supporting people with intellectual  and developmental disabilities,  there is a  need to ensure that support includes opportunity for building relationships.

While some people will be social butterflies, building connections for others may be a slow, messy and complicated process. Sometimes you don’t find an answer, but you find a starting point.

When I look back at all of the work I have put into creating opportunities for friendship for my children, I can see that there were benefits even in  the failures, because of what it taught us.

Life, and relationships in general, are complex and fluid for all people. The value of social connection is too vital to overlook when supporting people with intellectual  and developmental disabilities.

Helping a person to enhance their image will help others to  see the potential in their ability to bring value to  these relationships. After all, a true friendship is a two way street, with both parties benefiting, as opposed to one person being seen as a charity to whom the nondisabled  person is doing a favor. Peer and other relationships have a better chance of developing naturally if they are built around the strengths and interests of the individual rather then random group outings.

Even if someone’s interests are complex or narrow,  painting a picture of what they are good at, and where they are successful, can elevate the perception of the person to those around them. This helps people to see the value in someone and to recognize what they have in common.  Commonalities open the  door for friendship  and  help create the social safety net that is a protection from  loneliness and it’s associated health risks.

lonliness infographic






New Research Suggests Social Issues are Down to Neurotypicals more than Autistics

Very interesting research. “…an important contributor to social and communication problems stemmed not from the autistic individuals, but rather from the neurotypical reactions, based on (by definition) exclusionary social attitudes…”

Intersectional Neurodiversity

colorful-brains-560 Picture by Joan M. Mas

Autism is seen, in popular representations, largely as a social and communication disorder. Formerly framed as stemming from an autistic lack of a “social instinct”, the current dominant idea is that something is deficient or missing in autistic social cognition. Often referred to as a cognitive deficit in “empathy” or “theory of mind”, much research on autistic social issues has focused on trying to clarify and detect this inside autistic brains and minds. The search for an elusive broken “theory of mind module” or “empathy mechanism” in the brain, and its ensuing cognitive manifestations, however, has led to conflicting results – with some scientists even concluding that autistic people feel too much empathy rather than too little.

Another view is that this is not simply an individual neuro-cognitive issue, but rather a wider social problem. Against the idea that autistic people have too much or…

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little girl looking behind her

My aunt and her husband lived in a duplex atop a very steep hill.  When we would visit I would lay at the top of the hill and roll all the way down, a vortex of sun and soft grass. When the sky stopped its slow pinwheel of blue and white I would race to the top to do it again. I liked the hill and I liked visiting my aunt. Her husband was quiet but on occasion he would play with me. “Big time rasslin!” he would shout imitating the announcer from whatever form televised wresting took in the late seventies. He would proceed to toss me about and chase me. It was fun.

I have a clear memory of one of those days, although I could not have been more than four. My grass stained corduroy pants, my uncle alone, television blaring. “Big Time Rasslin!” as he leapt from his chair. I was squealing, was it glee or fear? Being pinned. Being in pain. Being released to return to my hillside, rolling down.  I was an easy target for him, parents out of the picture, living with relatives who had problems of their own. Quiet and isolated, I existed as inconsequentially as grey background noise.

Years passed before I had the language or capacity to describe what happened to me or what it meant. Many more years before I grasped that certain family members needed me to be unreliable, calling me a liar, even about the most insignificant things. After all, someday I might tell.

NPR’s current series“Abused and Betrayed”  on the sexual assault of adults with disabilities sheds some light on the magnitude of the problem within that population. To look at my own children who bear this diagnoses, and know that the staggering odds of them being sexually assaulted is unacceptable.  In addition to training and education, we must view these people as valuable and worth protecting.

Let’s go beyond not only being willing to act on signs of abuse, to being active in creating a social safety net that provides  connection, relationship, and a sense of worthiness for people. Isolation is the enemy.  Open your eyes to the people you know, adults and children, who are vulnerable. You can actively reduce that person’s chance of victimization by taking steps to help them develop friendships and connections that foster their own sense of self-worth and teach them what healthy relationships should look like. Changing the climate that has allowed abuse to propagate is an overwhelming task, but we have an opportunity to start with our own neighbors.



pexels-photo-220432My husband was recounting a story to me about a friend who has a child with a disability. Something bad happened to the child at school. Naturally, the parents wanted changes made to ensure that their child was safe. The school did not provide what was needed. The family moved on to legal action but, still never received adequate assurances that the child would be protected; therefore, the child never returned to school.

The friend’s statement was the school system “knew they could just wait us out. They knew that, regardless of our ideology, we would ultimately do anything to keep our child safe, even if that meant giving up.”

Having resorted to legal action for issues regarding our own child in the past, I understood completely. Regardless the weight of the injustice of the situation, accepting our “favorable” resolution was the only option, because continuing to fight meant that, ultimately, my child would be the one to risk the battle scars.

Many families like mine, where someone has a significant disability, often find ourselves in need. We are in need of medical treatment, equipment, supplies and health workers, personal care aides, and, where I live, out-of-state transportation to medical specialists. We need person centered supports, therapies and respite providers. We need special education services, many times at schools that are not close to home. We need; therefore, we act.

We fill out the forms. We go to meetings. We try to keep up with the ever-changing morass of rules and regulations that surround the “services” that are supposed to “support” us. We sit in rooms with people who hold the power and privilege to grant or deny these needs. Sometimes we are disrespected and disregarded. Even then, we do what is needed for the well-being of our children.

Although most people go into education and human services with good intentions, these positions are, often, not well paid and turnover is high. So when the occasional “bad apple” comes through, our families are vulnerable. Even when we have “good” service providers, we carry the weight of knowing we can lose them at any moment, and have to start over. The weariness of reciting your child’s entire life and medical history to yet another stranger. Yes, he was a preemie. Sorry, I don’t remember his Apgar score; he’s 17. Ok sure, let me go look that up for you. I thought I’d hacked the system by keeping pre-made copies handy, until they started insisting, “I’m sorry, ma’am. We still need OUR forms filled out.“

Cuts to programs that serve people with disabilities will only serve to shift more weight onto families. Like our friend, most will do “anything” to keep our children safe, but if the only safety net we have is pulled from beneath us, that weight could become crushing.

We need to work together so that our vulnerable families are able to survive. I believe the answer lies in the capacity of each other, the greater community, both to come together to fight for service systems that actually serve, and to form relationships that lift us up when our burden becomes too heavy.





Wait for it

tagsI  had the pleasure of attending a meeting recently  where John McKnight was speaking about families as the catalyst for change in their communities.

The organization that hosted the meeting is the Starfire Council and you can learn more about the work that they do here.

I was excited to attend the meeting because I am interested in starting a work that focuses on using the  strengths of people with severe disabilities to facilitate connections and strong social foundations for themselves and the communities they live in.

Our current US administration seems intent on cutting funding for programs that provide supports for people with disabilities. This has created a sense of urgency in me to develop alternative resources for my own children to live a life of their choosing.

Something fascinated me that afternoon at Starfire. We were divided into small groups and when one of the women in our group introduced herself someone asked her if she worked for Starfire. Her reply was “No, I have a son”. Pause. I was still looking at her waiting for the rest of the sentence. I have a son …with a disability, with autism, cerebral palsy, a genetic disorder, something.


The pause was all on me. I have become conditioned to both hearing and saying these descriptors, identifying myself and our family as one who has a child with a disability.

Some people want to self-identify with their disability and embrace it as part of their personhood. Other want to distance, themselves from such words, view them as private. “Mom bloggers” get blasted for oversharing. There is a lot of discourse around language and disability.


When referring to people who are disabled, specifically intellectual and developmental disabilities, the current trend in human services where I live is consumer. I hate that word, consumer. It’s definition lying too close to the ”useless eater” ideology of Nazi Germany for my comfort.



Client, another favored term, seems to afford slightly more dignity but still seems heavy with accusation. A client is needy, a receiver of services, not one who gives back.


I have heard people who express discomfort with those terms use “the individual” in an attempt to be a bit more humanizing, but we all still know to whom they are referring.

Those people. The ones who are different. Other.

There is a need to provide that distance with our language because of the way those people are treated. The atrocities they are expected to endure, from controlling and commodifying their every waking moment to abject neglect, can be justified or somehow made acceptable if they are “differently abled” and their needs are not like my own, their needs are special.

Out in the real world, these lingual barriers can dissolve. We can share an interest or a passion without needing to refer to someone as a consumer, client or individual, because we can be a classmate, coworker or friend.  All people need love, acceptance and belonging, things not found in the world of paid services, but amongst the everyday social fabric of normal life.







Sitting at the top of the bleachers in my elementary school gymnasium, I had a small sheaf of papers laid out on the seat behind me and a pack of crayons. I was illustrating a very vivid story that was running through my mind: a horse with wings, a girl with a sword, and a  hidden cave accessible only  by swimming through a crystal clear lake. My reverie was brought short by a voice from below.

“Hey Angie, can I color with you?”

I stopped and looked down to the boy who had spoken.  Peter, his name was. Asshole. Fifth graders didn’t “color” with each other.  He was trying to impress the two girls seated next to him. I turned my back to their giggling to  finish my project.

Peter was the kind of boy who made every team, got called on by teachers and was given awards. He was a student that everyone knew. He was fawned over, exemplified, and …significant.

I was invisible.  I had friends. I was not disliked by teachers. I just didn’t matter in the grand scheme of the school culture.  I was tired. My life was chaos. I didn’t have nice clothes or extracurriculars or parents with money, or parents who were present, for that matter. I was hauled in and out of special education, and if there was a rhyme or reason to that process it was unknown to me.  I was a quiet child,  not a behavior problem, unnoticeable.

I would imagine that the contrast between Peter’s education and my own was stark. The clubs, accolades, and opportunities must have been a buffet to feast his mind on,  and probably, his ego. On the other hand, for me school was a place to survive until I could go home to do what I really wanted.  Be outside. Draw. Let my mind carry me on adventures uninterrupted by ringing bells or annoying classmates.

But the point is not to vilify Pete or others like him, but rather to point out that some things in my life could have been different, and possibly made a difference in the way I experienced school.

Being pulled out for “services” was and still is in many places, common. It can also  be stigmatizing. To qualify for such services, your deficits must be documented, quantified and labeled . I can remember the notes on my report cards  that said I  did not pay attention or participate in class.  Did my  “record” influencesad studenst the lack of interaction I received from teachers? Did it influence where I was seated and what opportunities were given to  me?

While those questions may not be answerable, research has shown that teachers are influenced by the labels students carry, and that it affects students education.  What influence does this labelling have on parent expectations?

I can see the effect that expectations have had on my own children in vivid detail. One of my sons looks terrible on paper.  A plethora of diagnoses followed by stacks of tests with alarmingly low numbers presents an image of ineptitude, incapacity and incompetence. The real person, however, is a different story.  Possessing a strong moral center with a somewhat irreverent sense of humor, impeccable manners, strong work ethic and boundless curiosity, he is both pleasant company and an asset to any setting.

I am often put in the position of having to focus on my children’s deficits in order to obtain services that are supposed to help them reach their potential, but If image effects expectations, and expectations influence performance, then the time has come for parents and educators to turn their focus on helping children showcase their strengths to obtain the desired outcome of thriving students and meaningful education.


Echoes of Atalissa: Federal agency sues bunkhouse owner for exploiting mentally disabled workers

crumbsIn September 2016, the EEOC sued Byrd’s company, Work Services Inc., alleging it had forced its intellectually disabled workers to live in a crowded, substandard bunkhouse, paid them “unconscionable wages” that were less than what nondisabled workers were paid, and subjected the men to a hostile work environment in which they were called “stupid,” “retarded” and “dumb.”

Over the past year I have slowly been making my way through Dan Barry’s The Boys in the Bunkhouse.

The author tell some of the history of the rise and fall of  State Institutions in Texas and how the financial and physical exploitation of so many intellectually disabled adults became not only easy but desirable for companies, the specifics of which surrounded Henry’s Turkey Service and the men that were kept in servitude in the small town of Atalissa. This book  also provides an education about the practice of paying sub-minimum wage to workers with disabilities.

Advocates for sub-minimum wages and “sheltered”  work settings have proposed that the elimination of such programming would result in people with significant disabilities being left at home or shunted into day habilitation programs without the dignity of work, or even a token paycheck to call their own; however, the stories of how these policies impacted and devastated the lives of real human beings in The Boys in the Bunkhouse brings into sharp focus the ugliness and potential for exploitation that can lurk beneath even well-intentioned efforts to maintain a segregated workforce.

Although repetitive piecemeal work may be an appropriate and needful job for some, for others it is unreasonable that they compete with non-disabled workers in that setting. This doesn’t make those with significant disabilities the pigeons we throw our crumbs to. Believing that all people have capacities and that they have the right to  pursue their own interests and passions is foundational to moving the conversation beyond who belongs in the community  to how we are going to help them get there.



apples-fruit-red-juicy-39028She put a padlock on the outside of her bedroom door. My mom’s roommate. She was beautiful and wild and I was completely in love with her. She was kind to me. She took me out for spaghetti once. Another time a picnic. But that day, the day of the lock, she was enraged. She hated my mom’s boyfriend with a passion. “He was in my room again wasn’t he?” I didn’t know. I stayed far away from the boyfriend.

Roommate accused the Boyfriend of eating her food. I was afraid to tell her it was me. Her food. Mom couldn’t keep groceries in the house because she was on a diet. We usually had Saltines and Boyfriend’s beer. I don’t know what my mother subsisted on, and Boyfriend would get fast food. But Roommate had watermelon, and carrots and cheese, fancy flavored waters and apples. When I would ask mom for dinner I was given a couple dollars to ride my bike to the gas station. “The Convenient” we called it. Chips, candy bars. It was something.

Then Roommate was just gone. An open door. A twin bed, a mirror propped on the wall, a small bag of garbage. I wished I had not eaten pieces of her watermelon, or smuggled out her carrots and cheese, but I had a new bedroom. An upgrade from the couch. I hauled my clothing from the hall closet to the big closet in my new room. I could see the bay from the window. I had a sheet and a pillow. It was okay.

Mom was in the Navy and when you are in the Navy you had to go “out to sea” at certain times. I think it was once a month, or if there was a hurricane or storm. In my couch days, I could be gone before Boyfriend was up. Out the door, into the swirling sea of neighborhood kids or to the actual sea, the bay, to play in the sand. Some of the parents in our complex wouldn’t let me in their house. They didn’t want “messed up with those white people.” Others always seemed to have an “extra” sandwich or a glass of Kool-aid when I was around, even if it wasn’t lunchtime. They knew.

That all changed with my new room. It was that weekend, mom was going out to sea. I woke early needing to pee. The door wouldn’t open. I pounded. Silence. My bay view window also overlooked the parking lot. Boyfriend’s car was gone. The hardware from Roommate’s lock had remained and he had locked me in. Desperation. Roommate’s abandoned bag of trash provided a Big Gulp cup, a makeshift toilet.

After a few hours, I began yelling for help out of the window. No one answered. Our apartment was on the end, separate, only two units. The only other white people in the complex, two ex-Marines, like Boyfriend, lived there. That night, when Boyfriend returned, they appeared and called him over. I would not try yelling out the window again. Upon release I raced to the bathroom to gulp handfuls and handfuls of water. I was warned not to tell. I learned to prepare. Rinse the cup and put it under the bed. Get what you could and hide it. Saltines. Beef Jerky. Between the mattress. Under a pile of dirty clothes. Tucked up inside the corner of the closet. It was still never enough for a whole weekend. It was better than nothing, better then hours of staring out the window with your hunger as your only company. I snatched a couple books from mom’s room. The Clan of the Cave Bear. The Story of O. Not exactly child friendly, but my mind was hungry too. It was a hell of an education.

I’m the adult now, and one of my kids is hoarding food. Crackers, fruit, frozen waffles. Anything he can get his hands on. Under the bed, between the mattresses, in the drawers, in the closet. I worry that we’re going to get bugs. I’m afraid he will get sick. I’m constantly cleaning it up. A constant reminder of his life before he came to us. A constant reminder of what we share. I have granola bars in my car. Protein shakes in my purse. I once stayed at a hotel that had bowls of shiny apples in the lobby. I was only there a few days but I steadily collected apples in my room. So many apples. I didn’t eat them. Such a waste. But I don’t need to be hungry, I just need it to be there. And so does he.

I got him a box with a lock and a key. The key is his. I ask him if he will at least keep the food in the box. Yes, he is enthusiastic about the idea.

My mind can’t help but go to other people I know, people who do not always have keys. People whose access to food is decided by someone else, an authority who has deemed them too fat or too foolish decide when and what they eat. People so desperate they will resort to violence over a juice box. People left to sit for hours, whose minds are surely hungry even when their stomachs are not. I think about food, power and control. I give my son the key to his little box, and assure him he will always have the key, and maybe that will help.