Collective advocacy must replace mother-led campaigns

By Louise Kinross

A decade of activism by British mothers of children with disabilities hasn’t produced positive change in the lives of disabled people, write two researchers in a fascinating article this month in Disability and Society. The authors—Katherine Runswick-Cole and Sara Ryan (photo above)—are disability studies scholars and parents to children with intellectual disability. “Despite the efforts of countless mothers of disabled children, and others, over the last 10 years, the outlook remains bleak,” they write. “We live in a world now where our children with learning disabilities will die on average 23 to 29 years before their peers (NHS England 2017), startling evidence of the limits of advocacy for, with and by learning disabled people.”

We interviewed Sara in 2015 about the preventable death of her son Connor Sparrowhawk, an 18-year-old with autism and seizures. In 2013, Connor drowned alone in a bath in a National Health Services treatment unit. The NHS trust that ran the unit initially attributed his death to natural causes, but his parents called for an independent investigation that found his death preventable. Last year, Southern Health in Britain was fined just over $1.8 million dollars for this preventable death.

Sara and Katherine, who are at the University of Oxford and the University of Sheffield respectively, argue that campaigns based on mother advocacy have failed for generations. Yet every new generation, not looking back, insists they’re pioneers in the cause. The authors suggest we need to move away from mother advocacy—which is undermined by a culture of mother blame, focuses on individual families vs. systemic problems, and pits mothers of young children with disabilities against mothers of adult children—to a new collective activism that brings all sorts of people together.

BLOOM: You note that many parents of children with disabilities believe that the general public just doesn’t understand the discrimination their kids face, and that if only they were made aware, changes would occur. But you don’t buy into that. You say you’ve been doing this work for 10 years and conditions in the U.K. for people with disabilities have only gotten worse.

Sara Ryan: Yes. There was a good chunk of solid policy in the U.K. at the beginning of the 21st century that engaged with learning-disabled people as human beings who we need to value, and who have aspirations. That positive movement has come to nothing. Things have gone backwards.

Ten years ago, we thought we were pioneers in raising awareness and we’d sort everything out. We didn’t realize the generations of parents and mothers who had done the same things we were doing. We disempowered the people who came before us.

BLOOM: You point to something I’m very aware of—which is a split between young parents of kids with disabilities and older parents of adult children, who have been advocating for a long time. I know when my son was young, I didn’t want to hear about the experiences of adults with disabilities because I wanted to focus on his unlimited potential. I wanted to believe we had the capacity to make big changes.

Sara Ryan: As young parents you’re totally fresh, and you think things won’t be as bad for your children.

BLOOM: In a way, you don’t want to hear about the real struggles of older parents.

Sara Ryan: I understand that. You’re facing something unexpected and unfamiliar, and you have a lot to grapple with. But it’s really unhelpful in terms of social movements and change if the movement is inherently fragmented when people break off when their children go into adult services.

BLOOM: It’s so short-sighted, to turn our backs on the families who have done the hard work before us.

Sara Ryan: It’s also sustained by big charities who almost 'groom' the younger parents to make them feel they’re pioneers in leading the way. These charities have been saying the same things for 40 years, and it’s not in their interest to say it hasn’t worked. They present their campaigns as something new for parents of young children, while erasing the work that’s been done in the past.

BLOOM: I guess promoting a campaign that focuses on young children—and the sense of possibility inherent in them—is more likely to be well received than one that focuses on the realities for adults.

Sara Ryan: Young children are cute. But there’s a change happening with young mothers today. There’s one mother on Twitter who posts a photo of her young son with Down syndrome beside the facts about the early death he faces. She wants people to think about that, and it’s really powerful.

BLOOM: You talk about mother blame in your article—whether we’re blamed for our child’s disability, or blamed for not doing enough or the right therapy, or blamed because our children are costly. How does mother blame influence the efficacy of social justice campaigns by mothers?

Sara Ryan: That’s an interesting question. In our original paper we were saying that mothering is an invisible endeavour, but by token of having a disabled child, your mothering becomes visible. You’re seen as a poor mother due to your child’s unruly behaviour.

When we began our campaign #JusticeforLB [LB stands for laughing boy, a name Sara used in her blog about Connor], there were attempts by the trust, the local authority and NHS England to blame me, or to cast me as an irrational mother, to diffuse the strength of our arguments. But what was unique about our campaign was that over time, the demand for answers became a collective endeavour by a diverse range of people. Most had never met us. That reduced the potency of the 'mother being the problem,' so our campaign was very effective.

BLOOM: You refer in your article to a new form of advocacy called unmothering. Can you explain?

Sara Ryan: It’s about loosening that expectation that the child and mother bond is somehow essential, and allowing other people to step up and be involved in a campaign—to take part and speak and act. If the campaign is just about a mother, it’s an individual focus, which is necessarily weaker.

BLOOM: You write that unmothering doesn’t devalue mothering, but disrupts ‘the idea that the mother alone is responsible for raising children.’ How was the #JusticeforLB campaign an example of unmothering?

Sara Ryan: It was the collective approach of it. We ran a campaign within the campaign called 107 days of action, to mark every day Connor had been in the unit before he died. We asked people to adopt a day to fundraise for our legal fees, or to raise awareness. We had a teenager who canoed 100 km to the House of Commons with a photo of Connor on her back. We had a Brownie pack in New Zealand that drew pictures of buses, which Connor loved. We had people who did lectures or sports events in Connor’s name. People adopted a day to do cake sales. These activities had nothing to do with mothers, and in most cases they were undertaken by people who didn’t know Connor or our family.

BLOOM: How did you get people who weren’t personally invested in your family to participate?

Sara Ryan: I’d been writing a blog about Connor, and early on it was really funny stories about the hilarious things he did. By the time he died, so many people were reading the blog, which was anonymous at the time, that they felt they knew him. That made the impact of his death more powerful. He wasn’t a learning disabled person. He was a fully fleshed out member of our family, and he was very funny. The fact that he was a beautiful young man with funny stories was what took hold.

BLOOM: Yet you note that storytelling by mothers hasn’t traditionally produced results.

Sara Ryan: I think stories are important, but I don’t think they make change. The Disabled Children’s Partnership recently launched a new campaign called #TheSecretLifeOfUs to raise awareness of the challenges faced by families. But the campaign is premised on the mistaken assumption that the lives of disabled children are hidden.

BLOOM: Yes, you note that children being excluded from school and bullied, and the isolation and poverty of families, has been well documented.

When Connor died, the NHS trust first blamed his death on him, saying he had died of natural causes. Then they shifted to criticizing you.

Sara Ryan: A day after Connor died, a document called a briefing on the mother’s blog was produced and circulated, which suggested that I might be troublesome because I’d written that Connor had had an earlier seizure. Blame is completely at the heart of it. The biggest example was before Connor’s inquest, our solicitor read transcripts of evidence given by staff. They said things like ‘My relationship with Dr. Ryan: I was very scared of her. She was unusual.’

BLOOM: As opposed to staff testifying as to why it was that Connor ended up behind a closed door in a bath where he had a seizure?

Sara Ryan: I had said to staff ‘Connor is having seizures.’ It kept coming up in the inquest that the defence for each of the staff members was that the mother was so difficult it was impossible to provide good care to Connor. When Connor was in the unit I wouldn’t have dared to be angry, for fear of retribution. We were so worried about Connor.

Read the annual reports of the British Learning Disabilities Mortality Review.

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'I'm calling attention to the whiteness' of health care

By Louise Kinross

Sarah Jama is a co-founder of the Disability Justice Network of Ontario. She has a long history of disability rights and anti-racism activism. While studying at McMaster University, Sarah headed the National Educational Association of Disabled Students for a two-year term. She also founded Maccess—the first peer-run service for students with disabilities at McMaster. This Wednesday Feb. 6, Sarah is speaking on Moving Toward A Disability Justice Revolution at Hart House at the University of Toronto. I learned a lot about her work through this video of a talk she gave last year called We All Deserve the Right to Life.

BLOOM: In your video, you talk about how you learned at age four that as a black, disabled girl, you didn’t have the same right to bodily autonomy as others. This happened here, at what was then the Hugh MacMillan Rehab Centre, when you came for your first physiotherapy appointment.

Sarah Jama: I was saying ‘No, I don’t want to do this,’ and they started to stretch my leg and my mom was freaking out, because she didn’t understand why it was painful. They asked her to leave the room, in order for the physio to continue, and she watched behind a two-way mirror, because she didn't want to get a coffee as they suggested.

When I talk about navigating the medical system with an immigrant family, a lot of times, without meaning to, people in medical positions play the role of the expert: ‘We know what’s best, therefore these things over time will be the best for your daughter.’ When the parent, or the person, isn’t seen to be the expert, there’s a lack of communication.

BLOOM: You said you and your mother were both in tears. Another time, when you were a teen, doctors wanted you to have a surgery. You didn’t want to have it, because it would mean you wouldn’t graduate on time with your peers. You had also had the same surgery at age 12, and it didn’t give you the result you expected.

Sarah Jama: The surgery, from my perspective, was an aesthetic one. It didn’t work the way I thought it would when I was 12. And it took four months for me to be fully rehabilitated. The surgeon looked at my mom like she was absurd in supporting me in my right to say no.

I talk about how these kinds of interactions, over time, can influence someone’s perception of bodily autonomy—that it means not having a say over certain areas of your life. Some people are viewed as experts over racialized bodies, which is dangerous when coupled with a lack of cultural competency.

An example is the criminalization of black and indigenous folks with invisible disabilities. Soliman Faqiri and Abdirahman Abdi and so many others with autism or schizophrenia have been killed by those meant to serve and protect, because being a person of colour, while having invisible disabilities, gets you perceived as being violent.

Our education system fails people with disabilities. In high school, I was given a spare in place of physical education. The school, at the time, didn’t have proper supports to support me in physical education. But that meant that I missed a lot of the sexual health education that’s taught.

We know from Statistics Canada that 82 per cent of women with disabilities will be assaulted once in their life in Canada. Sexual violence and education aren't linked at all, but we're missing key information on how to protect ourselves. The more I talk about how I missed out on that education, other people with disabilities tell me that they missed it, too.

When I’m talking about disability justice as a means to tackle forms of oppression, I’m coming at it from an intersectional perspective. The leadership, the people in positions of power, don’t reflect the disability community itself.

Within that, I’m calling attention to the whiteness of the structures that prevent people with disabilities from diverse backgrounds from being able to participate in all facets of education and health care, or result in them being perceived as violent.

BLOOM: You are the founder of the Disability Justice Network of Ontario. What is the purpose of that network?

Sarah Jama: Our vision is to create a world where people with disabilities are free to be. Our mission is to build a just and accessible Ontario where people with disabilities have personal and political agency, can thrive and foster community, and can build the power, capacity and skills needed to hold people, communities and institutions responsible for the spaces that they create.

BLOOM: What needs to change?

Sarah Jama: The problems are structural. The conversations around accessibility today are stuck in the ‘90s. We talk about people needing access so we can expend our economic purchasing power. There aren’t enough conversations around how people with disabilities who move through our education, medical and prison systems have a right to equity in these spaces, and how racialized people with disabilities navigate these spaces differently.

Another structural change that needs to occur is in our provincial and federal budgeting. A lot of funding goes towards children with disabilities. That funding becomes minuscule in adulthood. It’s as though people with disabilities don’t exist in our adulthood—we disappear.

The lack of education created for people with disabilities needs to be addressed. How are we training young people in the history of disability justice? Where do you learn this? I had to do a lot of self-learning about how disability rights came to be.

Systemically, I was taught that when you have a problem, there are systems in place to support you. For example, if you have a problem in school, you go to 'student accessibility services.' But what do you do when that system doesn’t work for you? The conversation around justice and rights is not happening in our education system. 

The important thing for young people with disabilities to know is that you don't have to resign yourself to using the structures in place.

We're the largest minority in the world: we fit every religion, race and geographical location. Someone with a disability who experiences structural issues should understand that not being able to navigate spaces easily is tied to root causes. People with disabilities don’t fit the common understanding of productivity, so we are least likely to have a system in place that fits us, especially if we’re seen as not being able to contribute back.

I was able to push my university to allocate $30,000 to fix elevators that were broken. I also created Maccess, which is an organization run by students with disabilities for students with disabilities. At Maccess, students taught self-advocacy skills and had peer supports in place.

BLOOM: Something I valued in your video was that you talked about the rights of people with all kinds of disabilities—including people with intellectual disabilities and mental illness. I often see people with one type of disability distancing themselves from people with other types.

Sarah Jama: I think it has a lot to do with funding levels. Autism Ontario is funded one way, the Ontario Federation for Cerebral Palsy is funded another, and all of these groups end up competing for support, fracturing community instead of building it.

Disability organizations aren't built to be part of a greater community that collaborates. The way to combat that, 100 per cent, is for everyone to come together and acknowledge that we're part of a larger community that historically has been left out of many parts of society.

We're also part of an ever-growing community. One of the leading causes of disability is old age, so everyone at some point will experience it. The sooner we come together to build a community that fits all people with disabilities, the sooner we’ll have a world that fits everyone.

BLOOM: You talk about how people in our culture confuse the rights of people with disabilities with their value to the economy.

Sarah Jama: I think that’s a faulty and harmful argument. So many people with disabilities can’t work, and do they have the right to exist then, if they can’t contribute? It’s similar to the way seniors are treated. Once they age out of the workforce, they're seen of as disposable.

We see conversations in the public media now about the right to assisted suicide. What about the rights to supports during life? Why does more funding go toward prenatal screening of Down syndrome—and I’m pro-choice—but not toward supports for adults with Down syndrome? The issue lies with institutions  pre-deciding where someone can access support. Who really deserves life, and who has the right to exist?

You have to earn your value, or you’re a burden on society. Couple that with youth with disabilities not knowing about their rights, or that there’s a community of people who have fought for their rights, and by the time they turn 18, depending on their capacity, they struggle with self-esteem, with having community and with understanding their worth. They don’t know that it’s their right to have help and support.

BLOOM: I liked the way you question our culture’s obsession with independence.

Sarah Jama: We’re obsessed with the idea that you’re worth more if you don’t need anybody. It’s a strange cultural phenomenon that doesn’t make sense. No one is truly independent from anyone else.

Mia Mingus has written a lot about interdependency, and how we should be able to go to our communities and find supports, and not see it as a loss of autonomy, but moving toward a larger collective of potential.

For example, nobody tends to be able to survive without going to a grocery store. But that food comes from a farmer. You didn’t package that food and put it in the grocery store. You’re dependent on the structures that are in place, and the community that puts that grocery store in place. We need to teach kids that we all sort of rely on each other, and that’s okay.

BLOOM: I noticed you're working with the Hamilton Wentworth District School Board to create curriculum to address anti-black racism. Is this something we need to work on with staff and families in children’s rehab?

Sarah Jama: Yes, I think so. I’ve created a black youth mentorship program for 40 black youth that meets monthly at Sir John A MacDonald Secondary School in Hamilton to talk about their worth and the way to navigate society and the supports in place for them.

On Feb. 12 we have Robyn Maynard coming to speak with them. She wrote Policing Black Lives, which is an acclaimed book on the history of policing in Canada. We also have Sandy Hudson coming, who is one of the founders of Black Lives Matter in Canada. On Feb. 25, the same youth will be meeting with black elected officials at Queen’s Park to talk about being black and navigating politics.

BLOOM: What advice would you give parents raising kids with a wide variety of disabilities?

Sarah Jama: As much as possible, have conversations around the history of disability in Canada, and how we got to a point where we have a federal piece of legislation. Who are the movers and shakers in our communities? What provincial legislation do we have? What communities have pushed for the rights of people with disabilities to exist equally and freely? It’s important for kids to grow up knowing that there’s a community, because a lot of us internalize our experiences. 

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Amy Wright, founder of Bitty and Beau's, is CNN's hero of 2017

Two of Amy Wright's children have Down syndrome— Beau, 12, and Bitty, 7.

In 2016, Amy opened Bitty and Beau's Coffee Shop in Wilmington, North Carolina. Knowing that most adults with intellectual disabilities don't have jobs, she wanted to show what people with the same disabilities as her kids could contribute. The shop now employs 40 staff with disabilities like Down syndrome, autism and cerebral palsy (watch Matt's story in the video above). The shop's tagline: More than a cup of coffee, is followed by messages like 'Changing the way people value other people.' The shop was so successful that a second location is opening in Charleston, South Carolina. All proceeds go to Able To Work USA.

Amy was named 2017 CNN Hero of the Year for her advocacy. The award is determined by online voters who chose Wright among the top 10 CNN Heroes finalists.

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Wanted: Surrogate parents

By Louise Kinross

Any parent of a child with disabilities will tell you that advocating for a good education for their child can be one of the most challenging, time-consuming and even soul-destroying experiences. It doesn't seem to matter if you live in Canada, the U.S., Europe or elsewhere. It is always a battle. 

So, what happens when a child doesn't have a parent who can argue for the kind of schooling and supports they need?

In the state of Maine, they're looking for volunteers.

Last week I watched this news item about a program that's recruiting "surrogate parents" to advocate for disabled students. 

The volunteer "would...take the place of their biological parent in Individual Education Plan (IEP) meetings, visiting with the student [and] really advocating...in terms of their education," said the program coordinator Staci Fowler.

I googled the program and hopped on the Department of Education's web site.

There I found a 67-page PowerPoint for training surrogate parents, which is an excellent overview of special education in the U.S. (this could be a great resource for all parents).

The volunteer's role is to "interact with the school in the same manner that any parent would," reads one of the slides.

That includes visiting the child and the child's school regularly; consulting with those involved in the child's education; reviewing the child's records; attending Individual Education Plan meetings; exercising judgment in pursuing the child's interests; and exercising the child's due process rights.

I checked with Staci Fowler, the coordinator, and the program has 41 volunteers. They include teachers, special-education directors, education students and parents of children with disabilities. Many volunteers support more than one student. Most students are in residential care. At this point, no students are waiting for support. However, "even though we don't have kids waiting right now, we get several requests in a week," Staci said.  

The program is federally mandated and exists in each state, with some variations in how it's carried out, Staci said. For example, Maine pays for the volunteer's mileage, while some states pay a stipend for the person's time.

Staci said most volunteers have been supporting students for years.

It's hard to imagine how capable people could be recruited to take on such a daunting, long-term, unpaid task—one that has been known to bring parents deeply invested in their children to their knees.

But perhaps because these volunteers have expertise in the education system, and a bit of emotional distance from the work, they can be effective.

It seems to me that every parent advocating for a disabled student could benefit from a surrogate parent—to coach and support them through the process. 

The job just became more tenuous in the U.S. with the announcement that its Education Department has rescinded 72 policy documents that outline the rights of students with disabilities, part of the Trump administration's plan to scrap regulations they say are outdated, unnecessary and ineffective.

To learn more about volunteering in Maine's surrogate parent program, e-mail stacia.fowler@main.gov.

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It's 2017, and speech technology is still primitive

By Louise Kinross

I like our Dear Everybody campaign because the messages, like this one above, are real, and come from our children and families.

Most people assumes technology is an equalizer for people with disabilities, and in some cases it is.

But in the 20 years I’ve followed the use of voice devices, and more recently, voice apps that can be used on iPads, I’ve never seen a product that’s nimble, intuitive and fast.

In fact, you may have heard our Dear Everybody radio ad with Gavi, who uses a communication device. What you may not know is that Gavi had to pre-program her comments. She couldn’t express them live, because it isn’t possible to use a device at the speed people speak.

Indeed, “the process is often extraordinarily arduous and fatiguing for the person using the device,” writes McGill University scientist Gail Teachman in a study in Qualitative Inquiry this month.

Last week I had Marna-Rose Minett in my office. She’s raising her seven-year-old granddaughter Rayne, who has cerebral palsy. Marna-Rose noted that Rayne uses her communication device at school, but “we don’t use it much at home because we can understand her speech, and she has to go through so many different screens” to put words together on her device.

“It's slow,” Marna-Rose said. “If she wants something to eat, first she presses ‘I’ and ‘want’ on the first screen, then she picks the icon for ‘food,’ then within food she has to choose between ‘breakfast,’ ‘lunch,’ ‘dinner’ or ‘snack,’ then she chooses what she wants.’” 

I likened this cumbersome process to a person needing to look a word up in the dictionary every time they wanted to express it. “Can you imagine if you wanted to say a word, having to flip through a dictionary and find it first?” I said. “And then, when you're finished with that word, you have to look up the next one?”

We both laughed wildly. But it wasn't “ha ha” funny, it was sad and despairing.

There is an app on the market—Speak for Yourself—which tries to keep the number of clicks needed to find a word to two. That’s an improvement.

But anyone who uses mainstream business or consumer technology would gasp in horror if asked to play around with the setup, capabilities and speed of these speech apps and devices.

That’s why a high number of children and youth abandon them. 

Recently, I was struck by how many people are instead using using a letterboard and spelling out words, letter by letter, which are then spoken by a partner, to communicate.

That’s how Japanese author Naoki Higashida, who has autism and is largely non-verbal, wrote his two books: The Reason I Jump and Fall Down 7 Times, Get Up 8.

In ABC’s hit Speechless, actor Micah Fowler communicates by selecting letters to form words with a laser pointer attached to his glasses.

One of our clients spoke to me the other day by pointing to letters to form words on his letterboard, while I spoke the words to confirm accuracy.

Over the years, I’ve seen scientists study why children and youth abandon voice devices. And I’ve always thought: “Why wouldn’t they?”

“I keep hoping that Apple will develop a voice app or device that is as intuitive and user-friendly as its other products,” I wrote in a blog in 2014. “However, I’ve been hoping that for more than 15 years. I even began a small campaign of tweets to Apple CEO Tim Cook last year that went unanswered. I think the big computer makers have let our families down in not bringing their expertise to the AAC table.”

Why is it okay, in 2017, that people with limited speech have to endure an “extraordinarily arduous and fatiguing process” as their only option for self-expression?

If current technology was sophisticated and speedy, why would a famous author choose to write his books by pointing to letters on a letterboard?

Why would my son prefer to use sign language, even though it drastically restricts who he can communicate with?

I have an idea for a scientist. I want a researcher to use a voice device for one week—24 hours a day—and not use the keyboard, because many young kids using devices can’t spell. Then, write a paper about how “easy” or “hard” it is to use, and how it compares to an Apple device.

I e-mailed my idea to scientist Gail Teachman, and this is how she responded: “I think a really important aspect of that researcher’s learning would be that NOT ONLY are devices slow, hard to use and clunky, but using an AAC device can be stigmatizing. The researcher would very likely experience social interactions where suddenly they are not seen as an expert, not smart…”

There would be “lots of being spoken to ‘like a child’ and an absence of the respect they are used to receiving from listeners. In short, what they have to say would suddenly be judged less valuable, less worthy of another person’s attention, less important and therefore, not worth the time it takes to listen.”

Why is that experience acceptable for children who struggle to speak?

Years ago, I spoke to the head of our research department about applying for one of Bill Gates’ Grand Challenges grants to develop an intuitive voice device. But the grant needed to create a life-changing solution for large markets of people around the world

The number of people using voice technology is relatively small. But it still makes zero sense to me why Apple or Microsoft wouldn’t choose to enter the market for the goodwill they would generate alone. The media stories generated would be solid gold.

Gail Teachman is a postdoctoral fellow at McGill University with the Views on Interdisciplinary Childhood Ethics team. Her research examines the moral experiences of children—their views on what it right and wrong, good and bad, and just and unjust—particularly in the context of childhood disability. 

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Rana finds her voice in advocacy

By Rana Nasrazadani

“You’re not ready for university.”

A staff member said this to me in high school, in front of the whole class. These words, from a person whose job was to guide and support students, had a profound impact on me. Sometimes, they still linger.

It wasn’t these words alone that affected me. Staff had discouraged me from pursuing post-secondary education throughout high school. I believe they had a limit about how far I would go. When I pushed the limit, they made it more difficult. I was walking on eggshells. I felt like I had tougher expectations put on me than my peers. The pressure to live up to these standards increased each year, but without the supports I needed. It seemed like no matter what I did, it was never enough.

As a teen with a disability, my life was already quite stressful: appointments, physical therapy and surgeries were not out of the ordinary. I was also on a competitive swim team, practising multiple times each week. On top of this, I was a student with a clear plan to graduate in four years and continue my education.

When the staff member said I wasn’t ready for university, I didn’t say anything. In high school, I didn’t want to show any vulnerability. At the time, I felt I needed to manage the extra pressures related to my disability while making everything look effortless. But in reality, I was struggling.

I started to doubt myself. I had no reason to worry, as I was meeting the requirements to go on to university. But discouragement plays with your self-confidence. I worried about other people’s approval, and more so, their disapproval of my decisions. I began to question whether I should apply to university.

Then I asked myself “Why am I letting this happen?” Far too often, people with disabilities are seen as incapable, before being given a chance to participate as an equal in society. I didn’t need the approval of school staff to go to university.

I had a strong support system of family and friends and their encouragement to reach my goals outweighed those that discouraged me. Without telling school staff, I applied and got accepted to university.

I’m now a student at York University, studying towards a future in human rights law. As a former ambassador for Holland Bloorview, I always knew that I had an advocate in me. More recently, I got involved on the youth advisory committee of the Office of the Provincial Advocate for Children and Youth. I was part of­­­­ the We Have Something to Say Project, which brought together the voices of youth with disabilities from across Ontario to work towards a barrier-free future. I shared my story about some of the obstacles I faced in high school (p. 64).

Four years ago, if you’d asked me if I’d be where I am today, I would have had a hard time believing it. Opening up about these experiences has been very difficult. It took a while for me to gain enough confidence to tell my story on an open platform, but once I was ready, it was like a weight was taken off me.

Over time, I’ve learned that many students go through similar experiences. They feel the need to “cover up” their struggles because of social pressures and ideals. It can feel like no matter what you do, it will never be enough.

To those reading who are going through a similar situation, there’s nothing wrong with saying you’re struggling. Don’t bottle it up. I encourage people to talk about it. Right now it may be hard to see the positives, and it might feel like your situation isn’t getting better, but have confidence in yourself, trust your judgment and keep pushing towards your goals.

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'Advocacy is draining:' A reader responds

A couple of weeks ago we launched the latest in our A Family Like Mine video series: 'The children that we have... they're just as human'. Terri Hart-Ellis, (above left), mom to Addie (right), who's in Grade 7 in Milwaukee, Wisconsin, posted this fabulous response. Thank you Terri!

She speaks truth.

She admits for me something I don't often admit to myself. And sure as hell not to anyone else. I fear it smacks of complaint, that it might fuel the very prevalent wrongheaded belief that people with disabilities are in any way a burden.

My daughter is my daughter and I mother her the best I can because I love her. That is true of both of my girls. Because they are mine.

But advocacy is draining, as she states here. Decision fatigue is part of my every day.

How do we approach this homework? What words do I use to challenge this approach at school while still preserving collaborative relationships? Is this enough therapy or too much? What vocabulary does she need for this trip to the grocery store?

Do I accept that stare and move on because I'm tired, or do I have the energy to clarify what it feels like to my family? Do I facilitate an interaction here with this acquaintance of Addie's who is ignoring her, or just let the opportunity pass.

When do I start talking to the next level of school about how we don't do segregated education or alternative anything? Should I use this five minutes I have programming her communication app or calling the medical supply company again? What accommodations does she need for 7th grade camp and how can I know the answer to that, never having been to 7th grade overnight camp?

Not a whine, not a plea for pity. Just a rare admission. I think this woman's articulation of many other beliefs I have about disability being a full human experience and not a lesser one, along with her comments on the drain of advocacy made me understand both things can be true. It makes days rather solitary for a variety of reasons. And while I know how to make the most of solitude, sometimes there is just too much of it.

Terri Hart-Ellis

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How to work with your child's teacher and school

By Alison Morse

Parents of children with special-education needs face extra challenges in helping their kids succeed at school.

Sometimes we assume that a teacher will automatically know how to teach our child. But every child is different. It’s important for the school to focus on your child’s individual needs—not just what they assume based on a label.

These strategies will help you support your child by taking an organized approach to your relationship with the teacher and school.

Know your child

-Get educated on your child’s strengths and needs so you can speak about them

-Understand your child’s diagnosis and how it may impact learning

-Collects articles and information that may help school staff understand your child.

Understand the school system

-Learn about special education services and programs—and your role—by attending information workshops at your child’s school, the school board or community agencies. The school board’s website is another good source of information.

Develop and maintain a relationship with the teacher

The classroom teacher is a very important person in your child’s life. Maintaining an open and honest relationship means that you can quickly raise concerns and work together to solve them. The following tips are intended to help you with this relationship with the school.

Communicate effectively

Talking about our children is emotional and sometimes we focus on what we want to say without really listening to the other person. Remember to:

-Pay attention and listen to the speaker

-Ask questions about words and procedures you don’t understand

-Repeat information to make sure you understood what was said correctly

-Speak clearly and present facts in a logical order

-Ask for a break or to reschedule the meeting if you become emotional.

Learn to problem-solve and negotiate

The school doesn’t have unlimited resources and there’s usually more than one way to solve a problem. As a parent, you want to show that you will work with the teacher to find a mutually beneficial solution. Try to:

-Brainstorm new ideas without judgment

-Evaluate each idea and identify consequences

-Select best solutions and plan details for how they will be implemented

-Evaluate results and decide whether to continue or to try another option

-Recognize the resource limitations faced by school staff

-Look for areas of agreement and compromise.

Share successes

A healthy relationship with the teacher means that you don’t just approach when there's a problem. You need to celebrate successes and let the teacher know that you recognize their skills and expertise. To do this you can:

-Share good news about your child with school staff

-Thank the teacher for their efforts and be specific in your comments

-Attend school social events and volunteer to help in the classroom or on trips

-Let the school principal and others know when things go well in the classroom.

Preparation and follow-up

Working with the teacher and the school will include meetings, phone calls and e-mails. It’s important to organize the information you have about your child and prepare for meetings. Here are some tips:

Prepare for case conferences and meetings

-Make sure you understand the purpose of the meeting

-Find out who will be attending the meeting and why they will be there

-Take someone with you to help you by taking notes or speaking on your behalf

-Be prepared to share information about your child

Keep records and notes

-Make notes of key discussions from phone calls and at meetings

-Record the names and positions of people involved

-Ask for copies of meeting minutes and other documents

-Keep your notes and records organized in a binder or filing system

Follow-up on phone calls and meetings

-Before the end of the call or meeting, reconfirm next steps, actions and future meetings

-Send a thank-you note with a summary of your expectations

-Complete all the tasks that were identified for your action (e.g. make appointments, provide information, etc.)

-Monitor changes and track progress for future meetings.

Find help in the community

Advocating for your child can feel overwhelming. It's important to remember that you're not alone and many other parents have been through similar situations. As a parent, your knowledge and skills will grow over time. In the meantime:

-Seek out information about your child’s needs and strategies that may help

-Attend workshops or meetings that will provide information or support

-Contact community agencies that provide support to families

-Connect with other families of a child with similar issues.

Alison Morse is a parent of a young adult with cerebral palsy and developmental disability. Alison has been a volunteer special education Advisory Committee (SEAC) member representing Easter Seals since 1992. As the provincial coordinator for special education at Easter Seals Ontario, Alison manages SEAC recruitment, training and support and develops information resources for families. Recently Alison started the blog Easter Seals Kids at School. It already has 50 articles about what parents can do to support students. This post Advocacy: How to deal with concerns at school outlines the chain of command to follow when you're experiencing problems. The tips above were collected from parents and professionals across Ontario. 

Photo above by Jodi Ravn. Holland Bloorview staff will remember the Ravn family, which includes Eric, 11, Alex, 8, and Nicholas, 5. You may remember this BLOOM story written by the boys' father Lloyd.

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'I felt so small:' Parent tips on speaking up with specialists

By Sue Robins and Isabel Jordan

When my son was diagnosed with Down syndrome 12 years ago, our family was thrust into a world of medical specialists that was foreign to us.

I still vividly recall this harrowing experience with a cardiologist.

Aaron was a month old, and we’d been sent to our children’s hospital to make sure he didn’t have a hole in his heart. After the testing, my husband and I sat nervously in the clinic with our wee baby, terrified that he might need open-hurt surgery.

A well-dressed doctor burst into the room. I knew who she was, as we’d been told she was a "prestigious physician." But she didn’t introduce herself. She didn't say a word.

Instead, she proceeded to examine our little boy brusquely, placing a cold stethoscope on Aaron’s chest, which caused him to startle. I didn’t know I could speak up, so we sat there, passively, in silence.

“The ECG and echo showed that he has an ASD, but I hear no murmur,” she said. I dutifully wrote this down in my little book. I didn’t know what an ASD was, but there was no pause to ask questions. I felt so small.

“Book him back in a year for follow-up diagnostics,” she said. Then she turned her back to us and started dictating Aaron’s report into her phone. My husband and I looked at each other. We guessed this was a sign that our appointment was over.

“Are we done?” my husband asked. She stopped her dictation but didn’t look up. “Yes,” she said.

We packed up our son and left feeling very confused and a bit stupid.

I realize now that I should have spoken up to this doctor, who is actually just a person. I could have introduced myself and asked her to warm up her stethoscope. I could have politely interjected and asked my questions. There are so many things that I’ve learned since then.

Here are some tips Isabel and I put together to help you find your voice and get what you need out of your child’s health appointments.

Bring support if possible

There’s nothing worse than going it alone, especially to a new specialist. It can be difficult as a parent to listen to, process and remember all of the information. Consider bringing a family member or friend to help hear the things you miss.

If you’re on your own, bring a notebook and pen so you can write down important information. Because these appointments can be stressful, arrange to call a family member or friend after the appointment to debrief and hear some encouraging words.

Get to know your health providers

Build relationships in the health system. Instead of being intimidated by specialists, think of them as fellow human beings. We chat with receptionists about the weather and find out their names. Ask your child’s pediatrician where they’re going for holidays. Be friendly with all staff, and always take the time to say thank you for a job well done. We hope that if we see the staff as human, they will see us as humans too, not just as “special-needs parents.”

Get your questions answered

You have a right to ask your questions. Come prepared with questions written down in a journal.

Make sure you ask your most pressing question first, rather than leaving it to the end of the session, when there may not be time. Take notes.

It’s okay to ask your doctor to slow down and better explain answers until you fully understand what is being said. Don’t be afraid to ask what an acronym or a medical term means!

Find out how you can be in touch with the doctor if you think of something after the visit. Can you phone? E-mail? Do you need to book a follow-up visit? Ask for a business card or written contact information before you leave.

Know that you’re the expert on your child

We go to health specialists for their clinical expertise and knowledge. But as parents, we are with our kids 24/7, so we, too, bring essential practical information.

If you feel uncomfortable with a situation—with a suggested medication, with a course of treatment, or with a professional's approach—you need to put the brakes on and speak up diplomatically about your concerns.

Sometimes just asking to slow things down so you have some time to think things over is helpful. Sometimes you need to be politely persistent.

It’s important to know that you can always ask for a second opinion or another professional to speak with. You can also ask to speak to someone in the patient relation's office. Some hospitals have family advisories and may be able to connect you with another parent.

Remember the visit is about the child

Prepare your child before the appointment for what to expect, and explain things as they happen on the day. Maintain dignity—by giving a child privacy when he or she has to change or by providing a blanket to cover up. Suggest they be given choices, such as which arm they’d like the blood pressure cuff put on. Model the behaviour you want to see. For example, ask health providers to speak directly to your child with questions. As parents, remember that the appointment is about your child, not you.

We believe that the better we get at speaking up, the better health providers will get at working with our families and providing the kind of care we want and need.

Sue Robins is a mom of three and family advisor at Sunny Hill Health Centre for Children in Vancouver. Isabel Jordan has two children and chairs the Rare Disease Foundation in Vancouver. 

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Dutch student heads home with new vision of advocacy

By Megan Jones

In February, 23-year-old occupational therapy student Anna-Lena Burdick arrived in Toronto from the Netherlands for a 14-week study placement at Holland Bloorview. While here she says her perspective on working with children with disabilities shifted dramatically. She learned about the concept of advocacy, and the role health professionals can take in being a voice for their clients. In the Netherlands the idea was one she’d never considered. There, she says, the concept isn’t widely embraced, and, in her experience, students aren’t taught how to become advocates for their clients.

Below, Anna-Lena, who grew up in Germany, shares her experiences and insights as a student working at Holland Bloorview and why she believes clinicians need to back their clients inside the clinic and out.

BLOOM: How long has your work focused on disability?

Anna-Lena Burdick: Not very long. I started to focus on disability when I began studying occupational therapy at university three years ago. Before that I wasn’t really exposed to people with disabilities. I’ve always liked working with kids. But Holland Bloorview was my first real exposure to kids with special needs.

BLOOM: You travelled far for this placement. What made you choose Canada?

Anna-Lena Burdick: Back in the Netherlands, the first couple of years of study are theoretical. You spend a lot of time learning about frameworks and different models of care. Many of the frameworks we learned about were developed in Canada, and a lot of our practice is based on what this country is doing already. You have a leading role, from my perspective. I wanted to see the best example of occupational therapy in practice. And plus, I also knew that Holland Bloorview was a leader in pediatrics and rehabilitation.

BLOOM: One thing you discovered here was the concept of clinicians acting as advocates for clients. How did that come about?

Anna-Lena Burdick: I was approached by my supervisor Darlene Hubley and she asked if I would be interested in working with her on a research project on the topic. She explained the concept of advocacy to me. It wasn’t something I had heard of before. It was totally new to me. Immediately I found it interesting and told her I would love to participate.

But when I first started I didn't know how to translate the word 'advocacy' into Dutch and German and it was difficult to communicate the idea of the project without using the English word.

I looked up 'advocacy' on Google Translate in Dutch. There are other words in Dutch that are similar, but not the same. The concept of advocacy never came up before in classes at my university. The term wasn’t mentioned, and neither was the idea of the role we might have ourselves.

Fully-trained clinicians in the Netherlands may understand the concept and know when they have to do it. But from a student’s perspective, I feel that we need some more guidelines. We need professionals to mentor us and tell us, “Here is a good example of a situation where we need to advocate. Here are the steps we can take to advocate for this client.”

BLOOM: Tell us a bit about the research work you’ve been doing.

Anna-Lena Burdick: We ran a series of interviews with a variety of people: students and clinicians, educators at the University of Toronto and one of the parents from the Family Resource Centre at Holland Bloorview. We were trying to figure out whether people were aware of their potential role as advocates, how professionals integrated advocacy into their work and whether students were aware of how to do it.

On a personal level, it was very interesting to see what each of their perspectives were, and to gain more of an understanding of what I should be taking on as a junior professional.

BLOOM: What did you take away from those interviews?

Anna-Lena Burdick: You can advocate on a micro level. For example, say the child you are working with needs special support at school. You could write a letter to the school’s administration explaining why it’s important the child get access to a particular program or therapy.

Or you can advocate at a higher level. You could try to influence the law. Even something as simple as noticing a building in your community that isn’t accessible for people with wheelchairs, and lobbying the government to make that space accessible. These may seem like small things but they can help others to achieve the fullest possible quality of life.

BLOOM: Why is it important for health workers to be advocates?

Anna-Lena Burdick: As occupational therapists, we take a holistic approach to patient care. We try to focus on the client and their individual goals. We build a pretty good idea of what the person needs, what their strengths and challenges are. But we also look at the environment they’re in. We try to see what barriers exist and how we can modify situations to help the client participate as fully as possible. We’re very aware of our clients’ everyday lives. We have such a comprehensive view of their needs and their goals. That makes us great candidates to advocate for them.

As a [clinician], you can also teach your clients to advocate for themselves. That can help them achieve more independence, which is a very important point, particularly from an occupational therapy perspective.

BLOOM:  What is the most important thing you’ve learned here?

Anna-Lena Burdick: The experience broadened my horizon a lot. I learned not always to focus on diagnosis. A diagnosis helps give an idea of the strengths and difficulties the child might have. But it has limits because each person is different. As a student it can be easy to get stuck on the diagnosis. But it’s very important to look at the child and their family as a whole, to focus on what that individual child’s strengths and [challenges] are, and on their particular goals and how to help achieve them.

I also love the idea of a family-centred focus. I think empowering families by making them a part of the team and a part of the child’s treatment is so important. I also realized that you always have to be aware that parents can have different goals than the child. And it’s important to listen to both. These two ideas were very new to me.

I’d like to go back to my university and encourage other people to think about advocacy and to become advocates themselves. I don't think many students know a lot about it. I want to try to inspire them with what I learned.

BLOOM:  How would you describe Holland Bloorview?

Anna-Lena Burdick: I think it’s just an amazing place. My supervisors were very focused on my learning goals. I feel as though they wanted my input and appreciated my perspective as a student. I also felt welcome as an international student. It seemed as though everyone wanted to get to know me and my story. It was a great feeling, and I’m very thankful for that opportunity.

Holland Bloorview has such a leadership role in children’s rehabilitation. I got the sense here of how important it was to help children reach the fullest quality of life.

Anna-Lena (bottom right) presenting her research work with Darlene Hubley, interprofessional education leader and Anna-Lena's placement supervisor.

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Jean Vanier wins $2.1 million prize for 'advocacy of belonging'

Canadian humanist Jean Vanier is the 2015 winner of the Templeton Prize, a $2.1 million award for his work bringing adults with and without intellectual disabilities together to live and work as peers in 147 L'Arche communities around the world.

The Templeton Prize, established by the late American financier and philanthropist John Templeton, recognizes someone who's contributed to affirming life's spiritual dimension, through insight, discovery or practical works.

"Isn't it vital that the culture of winning so common in our societies today, be transformed?" Vanier said in thanking the judges. "A terrible rift is created between winners and losers, between the so-called normal and the so-called abnormal, between the rich and the poor."

Vanier said that the people with intellectual disabilities he's lived with for 50 years "have taught me more than all those teachers and professors in schools and universities that I have attended. They have taught me about what it means to be human."

In an interview with BLOOM in 2013, Vanier said: "We need to understand that our treasure is not in our power, but in the deep acceptance of who we are, and who we are is different but we are all people. If we try to be who we are not, that tension will someday explode."

Read Vanier's acceptance speech.

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Son's death sparks a search for justice

By Louise Kinross

In 2013 Connor Sparrowhawk (with sister Rosie) drowned in a bath alone in a National Health Services assessment and treatment unit in Oxfordshire, England. The 18-year-old had autism, epilepsy and intellectual disability (referred to as learning disability in the UK). The NHS trust that ran the unit initially attributed his death to natural causes—but his parents called for an independent investigation that found his death preventable. Twenty months later, Connor’s mother Sara Ryan, a senior researcher and autism specialist at Oxford University, is still seeking justice for her son.

BLOOM: Tell me about Connor.

Sara Ryan: He was very quirky and quite eccentric. He had an enormously brilliant sense of humour. He loved transport—buses and coaches. He had a bit of an encyclopedic knowledge of history. He was very good with facts and figures and loved the legal system and the police. But he couldn’t leave the house on his own because he had no road sense and he couldn’t count to ten.

BLOOM: When did he go to the unit called Slade House?

Sara Ryan: He went to secondary school from 11 till he turned 18 and he was a delight really. Then when he turned 18, almost overnight, he got really anxious and very unlike himself. He was difficult to engage with, had lots of dark thoughts, and was in and out of school because he was aggressive. He began bashing his head against the wall and I was worried he was going to hurt himself or someone else. The night we admitted him he wanted to go home and they had to restrain him on the floor with four people face down and section him. In all his life with us, we’d never laid a finger on him.

BLOOM: You had concerns after he went in, specifically about him having seizures there?

Sara Ryan: He was part of a happy family and the minute he went into the unit, because he was 18, they treated him as an adult. We had to phone up to get permission from him to visit, which was very odd. They didn’t engage us at all and changed his medication. I visited and could tell he’d had a seizure because he’d bit his tongue and was very disoriented. They disputed that.

BLOOM: What happened the day of his death?

Sara Ryan: I got a call that he was unconscious and on the way to the hospital in an ambulance. When I got there the consultant said straight away that he was ventilated but there was nothing they could do. They switched off the machine while I was there. Two weeks later the NHS trust published in its board minutes that a ‘service user’ had died of natural causes.

BLOOM: At the time of his death, Connor had been in the unit for 107 days but hadn’t been assessed or treated. What were they doing?

Sara Ryan: He was there for 107 days and the psychiatrist saw him three times. The psychologist filled in some questionnaires, but they didn’t come to anything. They said they were going to do social stories with him, but they never did that. He was a school boy and they should have been taking him to school. But they gave him choices, so he’d say no and stay in his room and watch DVDs.

BLOOM: How did you get an independent investigation into his death?

Sara Ryan: Before he went into the unit I’d been blogging about our family's life with Connor. It was about all the amusing things he did. Lots of people subscribed to it and became very fond of him. When I posted one line on the day he died it went viral. And when we found out the trust was saying he died of natural causes—and was going to do an internal investigation that clearly wasn’t going to find out anything—we made a lot of noise online and eventually they capitulated.

BLOOM: What did the independent investigation find?

Sara Ryan: That it was a preventable death. The staff had the knowledge. They knew he was epileptic and I’d told them he was having seizures in there and was sensitive to medication change. They hadn’t properly assessed his epilepsy and he was left unsupervised in the bath. Twenty months later we’re still waiting for an inquest and the police are still investigating.

BLOOM: I understand the unit was later closed?

Sara Ryan: Nothing happened after Connor died and we contacted the Care Quality Commission. They were about to do an inspection there. They were so shocked by what they saw that they failed the unit on all 10 quality and safety standards and the trust decided to shut the place down. There was no battery in the defibrillator. It was dirty and there was no therapeutic environment.

BLOOM: What accountability do you want from the NHS trust?

Sara Ryan: We want the staff to be disciplined, as appropriate, and a corporate manslaughter charge brought against the trust. We want meaningful involvement at the inquest, which is provisionally set for Oct. 5. We also feel that the commissioners who were commissioning the service—which cost about $1,000 a day—have some role to play. The commissioners spend money on services that you wouldn’t let your dog stay at.

The mortality rates of people with learning disabilities in the UK are shockingly high.* Because the trust said Connor’s death was ‘natural causes’ we were concerned that learning disabled people might die regularly in hospitals and units and their deaths wouldn’t be properly investigated.

Through our campaign we had a meeting with the chief executive officer of NHS England and he agreed to commission a review into deaths since 2011 of people with learning disabilities and mental health issues in the care of the trust.

We want the law changed so that families don’t have to pay for legal representation at the inquest and we believe there should be an independent investigation if someone with a learning disability dies in a hospital or other secure setting.

BLOOM: In a report you produced, you wrote about the lack of humanity in how your family has been treated.

Sara Ryan: I think how they treated Connor was extended to us after he died. They stripped away any sense of him being part of a family and treated him as an object. Once he died they didn’t demonstrate any empathy or compassion or understanding for the pain they caused us and for all kinds of delays and obstructions and deceit really. It’s made what was such a horrific and unimaginably awful situation so much worse. For example, they had the trust’s barrister sit in at a pre-inquest review and try to argue that drowning is a natural cause of death.

BLOOM: What will your legal costs be?

Sara Ryan: Families in the UK don’t get any legal help for inquests and it will cost us almost $50,000. The NHS trust draws on public funds to arm itself with very good legal representation. We were able to raise the money we need through our social media campaign and selling postcards and other fundraising efforts, which is quite remarkable.

BLOOM: In your report you say ‘The ultimate barrier appears to be that learning disabled people are seen as less than human.’

Sara Ryan: Generally, in the way our social life is organized, our kids tend to go to special schools and leisure activities aren’t accessible, so people don’t come into contact that much with people with learning disabilities. The chance of having a job is low, so there isn’t a big community presence. When I started blogging about Connor I made him human in a way that he hadn’t been seen outside of his family and school. Even my colleagues started to chat with me about him. After the weekend they’d say ‘it was hilarious that Connor did this or that.’ They began to see that he was a quirky, funny young man. Ultimately we need to bring the human back so people can appreciate these kids as individuals like anyone else, who just have their own ways of doing and saying things.

BLOOM: You’d like to see more money allocated to community supports?

Sara Ryan: Assessment and treatment units like the one Connor was in have complicated costing arrangements and the money doesn’t tend to follow the person from the unit back to the community. Often the local authority has to find the cost of the support package. You might be able to stay in a place that costs $1,000 a day (indefinitely sometimes, a National Audit Report published last week found the average stay for someone in an assessment and treatment unit is 17 years), but when you come out the local authority hasn’t got the funding because of cuts to welfare costs. In addition, no one seems to know what good care looks like.

*A 2013 inquiry into the deaths of 247 adults and children with intellectual disability in England and Wales found women with intellectual disability died 20 years earlier on average than the general population and men with developmental disability died 13 years earlier. Over a third of the deaths could have been prevented with good health care.

Please see a talk Sara Ryan gave at a patient experience conference at the University of Oxford: How to hear voices that are seldom heard

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I am Nat's ghostwriter

This piece by Susan Senator (centre), author of Making Peace With Autism and the Autism Mom's Survival Guide (for Dad's too!) touched me. Susan always writes with great honesty and insight about raising her son Nat (left). Here she writes about her role in speaking for Nat, who has autism and limited speech. The truth of this line hit me: “I notice how the norm for most people in our family is to ignore Nat.” Susan describes how a child's inability to communicate will leave him isolated, even within the family, as an adult. And it's not because siblings and other family members are mean! I don't think parents of younger kids foresee this. I didn't. Much food for thought. Thanks Susan! Louise

By Susan Senator

Nat’s going home now. It’s always a blue-tinged moment for me when he leaves. I never fail to wonder if he is doing what he really wants in life. Is Self-Determination an attainable goal for someone like him? When Autistic Self-Advocacy Network (ASAN) says something like, “Nothing About Us Without Us!” can that include Nat? What if I am the person who speaks up for him the most? Am I then to be included in that “us?” I hope so.

I know I can speak for caregivers — the ones who really, truly care for and about their autistic loved ones, not the ones who phone it in or worse — when I say that we deserve a welcome at that table. And I do feel welcomed by the autistic self-advocates, and I think that’s how it should be. I wish their language could be amended to reflect the fact that people who have the challenges Nat faces really depend on others to speak for them. Some things about him have to happen without him. I wish it were not so, because I want him to be the author of his life. But he always has a ghostwriter, mostly me.

I don’t know how Nat feels about this reality. Is he used to not doing a lot of things for himself, by himself? Does this bother him? Or is he accepting of it? Maybe both. I guess everyone’s different in how much they accept of their inabilities. Anyway, I try so hard to talk to him, to include him in our conversations, but he still is talked about, talked over. Others are far worse than me in this regard. I’ve seen so many well-intentioned people ask me what he’d like to drink. To them, I am that intertwined with Nat’s presence. They think I know. This Christmas it was very natural for me to answer, “I don’t know, you’d have to ask him,” completely without anger. It came out naturally; I knew Nat would answer. How does he feel about these kinds of situations? I hope he’s proud that I just steer people to him, more than pissed off that I have to do that.

I notice how the norm for most people in our family is to ignore Nat. His brothers do not even think to include him in the simplest of activities, like looking at stuff on their laptops together. I wish it were different and yet this is how it has to be. Their lives, their decisions have to be their own. I know that if I were to ask them to include Nat they would, but would that be good for them? As it is they have had their lives changed greatly by having Nat with them — in good and bad ways. I cannot decide things for them without them. It feels like it is crossing a line to do that. Don Meyer, director of the Sibling Support Project, told me in an interview that you have to let the siblings have their own existences, let them do what they need, their lives are hard enough. That there are so many questions in their minds, fears for the future both named and unnamed, that they wrestle with in regard to Nat, that for me to then step into their consciousness and give them tasks, basically give them the message that the thing they are doing is not nice — would be an invasion of an important boundary. It’s not that they’re being mean. It’s that they are being themselves. I never let them be mean. But this is a gray area that now that they are 22 and 16 they must navigate themselves. They have to come to it themselves and the more they are allowed to be who they are, the more likely they are to come to Nat in the future and open their arms to him.

I try hard to let the three of them determine for themselves who they are and what they want to do with their lives. But they do need my guidance. They cannot be allowed to be mean. Is not including Nat mean, or is it merely what they do right now?

As for Nat, not being able to speak for himself much is one of Nat’s greatest challenges. He is frequently passive or unable to determine what he wants, and so it is a complete conundrum to help him in this regard. Helping him not be passive — the only way to do that is to sabotage things, make him so frustrated that he has to ask for them. It feels cruel and in the end, it doesn’t really help. It’s an ABA-ish solution, one where you may end up helping but the means of doing so are questionable.

You can’t force someone to move past their disability. You have to accept their limitations as much as they need to. You have to give help, and they have to accept it, but you also have to not help sometimes. Sometimes you also have to step back and let things go on in an unsatisfying, imperfect way. I don’t like that. And so, letting him go home Sunday evenings in this murky set of circumstances feels bad to me, like it does when people basically ignore Nat. In the end I have to hope that what we are doing or not doing for Nat is what he would want. Or at least what is okay with him.

Susan Senator is the mother of three sons, the oldest of whom has autism. She is an author and disability advocate and her published work can be found at http://susansenator.com.

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