How does having a disabled neighbour 'dash your dreams?'

Families protest the Weyburn, Sask. decision to keep a small group home out. This photo is from CBC News

By Louise Kinross

I’m embarrassed.

This isn’t the Canada I know and love. But apparently, according to two recent news stories, it is.

Last night I read about how the city council of Weyburn, Sask. rejected a home for four adults with disabilities in a new subdivision called The Creeks.

Four people!

According to this Toronto Star story, there was “tremendous pushback” from residents who’d bought expensive homes in the neighbourhood. “It kind of dashes the dreams and hopes of the people that live there currently,” said Coun. Brad Wheeler at a council meeting on Monday.

Just how, exactly, does having a person with a disability living on your street dash your dreams?

Oddly, the Star story includes a photo of the Weyburn sign welcoming people to what it calls “the opportunity city”—just not for the people waiting for the small group home that was tossed.

The developer of The Creeks supports the home.

This story played out as Ryerson disability scholars spoke to CBC Radio about a Nova Scotia human rights inquiry that found the government discriminated against three people with intellectual disabilities by locking them away in hospital psychiatric wards, for no medical reason, for years. When the complaint was launched in 2014 they were still living in hospitals.

“The conditions of their life were described as soul-destroying,” said Esther Ignagni, an associate professor in Ryerson’s disability studies program. For example, one person was locked in a room with a television for 23 hours a day.

The Nova Scotia applicants argued that the province should have provided them with the supports to live in the kind of small group home that Weyburn, Sask. residents just snubbed.

However, Walter Thompson, chairman of the Nova Scotia inquiry board, rejected the argument that timely placement in a small group home is a human right.

According to the CBC radio interview, there are 1,500 other disabled Nova Scotians waiting for such a home.

He also rejected the idea that ableism was behind the lack of community options.

Ableism is the “idea that disabled people are not valuable or vital parts of our society and it’s permissible to send disabled people away and …lock them up,” said Eliza Chandler, also an assistant professor in Ryerson's disability studies program.

Doesn’t the first half of that description perfectly mirror the attitudes and actions we see in Weyburn, Sask.? 

“These people have invested a lot of money into their dream homes, their retirement homes and to have the provincial government come in and pick a lot directly across from them, I don’t think that was the best choice,” Wheeler was quoted saying.

Chandler was asked what a world without ableism would look like. It would be “accessible and inclusive of disabled people and would value us as citizens and want us in your cities, in your town and as your neighbours,” she said.

Meanwhile, here in Ontario we're told the wait for a group home placement for adults with intellectual disabilities is over 20 years. I have been told, by a person at the end of the Developmental Services Ontario line, that it doesn't happen until someone in an existing home dies. 

I think Canadian kids need a new word on their spelling tests: ableism.

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In Canada, disability researcher says 'racism is very polite'

By Louise Kinross

Sadora Asafaw has worked as a special-needs coordinator in Holland Bloorview's Spiral Garden and as a recreation assistant running programs for the hospital's inpatients. She recently defended her master’s thesis in Environmental Studies at York University: Amplifying the Experiences of Black Youth with Developmental Disabilities and Their Families: At the Margins of Policy and Practice. Sadora did in-person interviews with eight members of four families. The youth with intellectual disability had autism or, in one case, a rare genetic condition. “Racism, socioeconomic status, ableism and gendered inequities produce institutional and systemic barriers that affect the care pathways of black youth and their families,” she writes in the conclusion of her study. We spoke about it.

BLOOM: What was the goal of your study?

Sadora Asafaw: To really hear the experiences of black youth with developmental disabilities and their families. In my research, when working at Holland Bloorview, and in looking at other community organizations, there is very little documented about the experiences of these families.

BLOOM: What do we need to know about the results?

Sadora Asafaw: How intersectional, or interconnected, some of their challenges are. So, for example, financial strain for families of children with disabilities isn’t a surprise. But in my research I learned that black people in Canada earn 75.6 cents on the dollar that non-racialized Canadians earn. I expected the financial strain of disability, but we rarely consider how these families have higher rates of poverty based on racism.

BLOOM: So it’s a double financial whammy.

Sadora Asafaw: For any family raising a child with disabilities, if you have money, you can try to offset some of those challenges. Money helps in your ability to cope with challenges and ease the strain. These families are marginalized by poverty based on racism, in addition to the extra costs of raising a child with disabilities. But I wasn’t able to find anything that looked at both in Canada—that disaggregated families with children with disabilities based on race. Organizations have just started to collect data like that to take a health equity approach.

BLOOM: Another finding was that most services for these families are located in higher-income areas, so not in the families’ own communities.

Sadora Asafaw: That is absolutely true. The families have to travel great distances, and it’s hard if they don’t drive. But another issue related to where the services are located is how these families manage challenging behaviours in their children as they get older and bigger. Almost all of the families told me they had been pushed out of a program in a higher-income neighbourhood, or were no longer welcome, because of their child’s behaviour when they became teens.

When their kids were a lot younger, they looked cute and organizations could accommodate them and their meltdowns. But as they got older, staff reacted with fear to meltdowns. When the youth grew to be six feet tall and black, they felt threatened by his behaviour. Some black families also felt that the policies of the organization were applied more harshly to them, and that staff responses were shaped by racist stereotypes of black males as threatening.

There was also a sense—in programs or at school or even in hospitals—that when a black parent was advocating on their son or daughter’s behalf, staff would tend to doubt or question whether the youth’s behaviour was part of their disability or they were acting out.

BLOOM: I know you also found families felt that their youth with developmental disability didn’t receive the best health care.

Sadora Asafaw: Yes. They explained how their child’s disability resulted in them not getting preventative care, where doctors would help identify potential areas of concern that needed to be worked on, as opposed to acute care. This fit with my research, where I learned that families of youth with disabilities—especially intellectual disabilities—are less likely to get preventative healthcare and health promotion.

BLOOM: There was an interesting quote in your study from a sibling who said her brother was very overweight and developed other symptoms and when the family pressed for answers, they were told he had probably had diabetes for some time and was in crisis.

Sadora Asafaw: When you add race and low income to the mix, preventative care is less likely to happen. If that family were high income and living in a community where they get preventative care, can afford many activities and are more aware of what to look for, it would probably be caught earlier on.

BLOOM: So there often isn’t proper monitoring of these youth for secondary health problems?

Sadora Asafaw: It’s not just monitoring. If a family is told they have to change their eating habits, and they’re living on a low income, what if they can’t afford fruits and vegetables? Or what if the youth throws away food because of texture, but the family can’t afford to pay a behaviour therapist for help, and there’s no community health centre to support the family’s needs? Health promotion may also look different for these families, or require more steps.

BLOOM: I know you talked about the cost and location of programs that were barriers.

Sadora Asafaw: I saw two things. Sometimes there’s an information dump about available services that leaves families feeling overwhelmed. They don’t know what to seek out, or how it may apply to their child.

On the other hand, sometimes workers recommend things that are so incredibly far from where the families live. If you’re working two to three jobs, and the program is on the other side of the city, and you have no transportation, how will you get there? Or families may not know that to get a spot in the summer, they have to register in the winter, so when they call, the program is full.

Enhanced care coordination alone is not going to address the challenges black families experience. We have to understand how intersectional these barriers are: the financial strain, and how that determines where you live, and where you live positions whether you can attend certain programs, and whether you can attend quality programs. We have to understand how a child’s challenging behaviour, and how it may be perceived as a threat, contributes to that family’s experience of isolation and lack of support. We’re talking about racism. And if we’re not confronting that in our policies and programs and practices, these systemic and institutional injustices will persist.

BLOOM: So you’re talking about how these families are marginalized in multiple ways, and how different kinds of discrimination stack up.

Sadora Asafaw: Yes. And if clinicians don’t hear about this from families, it may be because English is a second language for parents. Or maybe they’re from Canada and they’re afraid of encounters with doctors or teachers or other persons of authority. They don’t feel safe to voice their concerns through traditional reporting methods. They know that part of an organization’s protocol for their child’s escalating behaviour is to call the police. Writing a complaint doesn’t work for these families because it leaves them feeling more vulnerable to being penalized.

BLOOM: Something that really stood out for me in your study was when a mother talked about how she’d rather her son beat her up than call 911 for help, because police would treat him like a criminal. “They would handcuff my boy…make him freak out all the more and then because they’re going to go and take the situation out of my hands, because they’re probably gonna [say] ‘Well, you called us!...’ He doesn’t have language to speak and unless I know what cop is coming to my door…Nope! Not gonna go there.”

Sadora Asafaw: I hear about situations like that a lot. CBC just released a report that looked at deadly encounters and how black people are more likely than any other racial group to be a victim. But no one has dug deep to look at how this informs these families’ care pathways. You see how black, indigenous and other people of colour continue to be left out. We have to address all kinds of marginalization for these families when developing and promoting programs.

The South Asian Autism Awareness Centre has done some incredible and important work, but they’re doing it with very little funding and great demands. Families go there because they trust them and they’re able to meet people in their community.

BLOOM: So you’re talking about targeting care to different communities?

Sadora Asafaw: First we need to hear from those communities and understand what’s not working. Maybe we can work with local organizations that are culturally based. Sometimes faith plays a big role, so perhaps working with local churches or mosques or other sources of support. If service providers aren’t hearing from black families and aren’t seeing them in their programs and services, you have to ask why? What is a barrier? What leads these families not to feel comfortable?

We need to do more outreach to families that aren’t engaged. You know that saying in the disability community ‘Nothing about us without us?’ It applies to black folks and other indigenous populations. It’s not that we don’t know what to do. It’s that we’re not given the financial resources to develop the programs and the physical space to do it in.

People think that culture isolates everyone, and is why organizations can’t reach certain populations. But too often that’s used as a scapegoat to explain why families of diverse backgrounds are not coming to a program.

Families tell me they know right away when they walk into a place when they don’t feel welcome. In Canada, racism is very polite. You can go to a program and still feel pushed out through the words they’re using, or the way they selectively decide to apply policy, or in realizing that you don’t have the right words to apply for a service. How many people in the program look like your family? How many decision-makers look like your family?

How many black families begin a program and then don’t go back? It’s not just important how someone enters a program, but how they exit. Part of it may be that they’re protecting their own safety. When you don’t do something in the manner that the person in authority likes, you’re afraid about how they may respond. Maybe they will call children’s aid. Black families are far more likely to have their children removed by CAS than other racial groups.

It’s the same thing with the mother who didn’t want to call police when her child has a violent meltdown. She’d rather the child take it out on her, because she knows existing options won’t help her family.

BLOOM: What did families tell you things would look like in their ideal world?

Sadora Asafaw: One would be having a specialized centre or hub that is working to support specific ethnoracial groups with the needs and struggles they have. It would build community capacity of black and other racialized families, so they can gather community input along with the best evidence to inform their programs. It’s not that everyone there has to be black, but you would hope to see more people who look like you and are working towards the same goal.

When parents talk about support groups, they say they couldn’t relate to what was talked about in traditional groups, because their parenting challenges were different based on their ethnoracial background. I don’t know of any place in Toronto that looks at the specific needs of black families with youth with developmental disabilities.

The reason I focused on black families was that they experience some of the most difficult challenges, and are often afraid for their survival. They’re afraid they might not survive certain encounters when it comes to their safety. What would an organization look like where they could aspire to more, and feel they can participate and really belong?

BLOOM: I know we’ve begun to collect health equity data from families.

Sadora Asafaw: If someone calls a code white [for potential violence], is data collected on that? That might show biases within staff, or a way to better manage situations in future. Look at where certain groups are being served in the organization. Some families come directly from SickKids for rehab. But what about community programs?

Maybe the reason a community program is not diverse is because it’s not easy to get to. Holland Bloorview is in a high-income area where homes go for millions of dollars. Perhaps many of the people attending a program live in close proximity to Bloorview.

Look at the duration that families stay with a program. If families don’t feel comfortable, they won’t stay. What about families who are discharged from a program because the organization felt it couldn’t support them? Are there higher rates of black families discharged from programs, because too many codes were being called for their child?

The other thing I didn’t spend too much time on, but that some of the families touched on, was to recognize some of the similarities between black families and black workers in healthcare.

Black staff in this sector tend to be personal support workers or nursing staff. They’re frontline, not in managerial positions. They’re often in contract positions, so their roles are somewhat precarious. It may be very difficult for them to share their experiences of racism, given the politeness that accompanies it in Canada. If they’re constantly advocating for families who have experienced something they perceive to be different or unfair, they may be viewed as a troublemaker.

If you have less developmental pediatricians that are black, less occupational therapists that are black, less scientists that are black, you have less black people for staff to look to for mentorship and leadership. It’s great that there are a lot of black workers in frontline health positions. But you need to see them in management and leadership positions. Otherwise it can make it very difficult for black workers to voice their concerns or opinions or perspectives. 

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'Being a black male is...a safety issue over and above autism'

By Louise Kinross

Many of you know Amy Ma, who is chair of the family advisory council at Montreal Children’s Hospital.

Recently, Amy told me she'd heard a parent speak at a Black History Month event about her fears for her sons, who are black and have autism, and the racism and ableism they will face.

That parent is Sazini Nzula, and she lives in Montreal. Sazini has a PhD in medical microbiology and worked for years as a scientist. Sazini has two sons—Ethan, 11, and Jayden, 7. After Ethan was diagnosed with autism, Sazini trained in Qigong Sensory Treatment, a type of evidence-based massage that helps reduce sensory issues in children with autism. “At the time, we had to wait two years to get an autism diagnosis in Montreal, and another two years to get government help,” Sazini says. “This was a method that parents could use by themselves while they waited.” While teaching parents, Sazini was inundated with questions about other aspects of parenting children with autism. She now provides personal coaching to parents. Her book Beautiful Inside and Out: What You Ought to Know about Autism was just released. We spoke about Sazini's experiences with stigma related to race and disability.

BLOOM: Can you describe how Ethan and Jayden are affected by autism?

Sazini Nzula: Ethan still has language delays and only really began speaking when he was about nine. Before that he could say words, but now he actually talks. He has huge sensory challenges, which are better than before, and trouble with self-regulation. He has issues with behaviour and last year at school was horrible for him. This year is going well.

Jayden has challenges focusing and staying on task. He sometimes needs to wear noise-reducing headphones. Jayden also struggles with social interaction.

BLOOM: What has your experience been with stigma related to disability and race?

Sazini Nzula: There’s stigma from the black community, and then there’s stigma in general.

BLOOM: How are they different?

Sazini Nzula: In the black community it’s about having an invisible disability to do with the mind. I’m African, and it doesn’t matter how educated people are, there's still a tie to traditional African beliefs about witchcraft, because it’s scary and they can’t see it, so they don’t understand it. When it’s a physical disability that you can see, they can process that better. But if the mind is different in some way, it must be because of an evil omen.

BLOOM: I’m recalling now a story we did with a Nigerian mother who explained that disability is viewed as a taboo there, as something evil that brings shame on a family and is caused by the parents. Do you find that even when Africans have been Westernized, that some of these traditional beliefs are still deeply embedded?

Sazini Nzula: Absolutely. When Ethan was two I met a man who was educated in the medical field, and he told me he hadn’t told his brother that his child had autism, and the child was nine. I did some research and learned that in Nigeria and Kenya, surveys of doctors, special education teachers and social workers found these traditional beliefs about disability are still there. The stigma of disability is also a huge problem in Japan and South Korea.

BLOOM: I remember a parent here who explained that when her child was born with disability, for the first year, they were unable to tell anyone in her husband’s family, because of how disability was perceived in his community. So they had to make intricate excuses to prevent that side of the family from meeting the baby in person.

Sazini Nzula: In the part of Montreal that I live in, there aren’t that many black people. I remember meeting a Haitian social worker at a cultural event, and she told me that families were happy to speak with her about their children with autism, but they didn’t want other families in the community to know. So they wouldn’t come to events for families.

BLOOM: How do you deal with the stigma of disability in the black community?

Sazini Nzula: I chose not to let it affect me. I chose to tell everyone that my children have autism. I don’t have to hide it and there’s nothing to be ashamed of, in the same way that I wouldn’t be ashamed if my sons had diabetes.

What impacts me is stigma in the general community. For example, one time we were in a supermarket and my older son got separated from us. He can’t speak French and we live in a francophone province, so he pushed past someone to come and join me, and this woman went on and on about how he’d been badly raised, and how in this country we teach our kids manners. But my kids were born here. Had my son been a white kid, she probably would have said something similar but not ‘in this country.’

As my son gets older and taller, I started to be afraid of being outside. When I was at the Black History Month event, I talked about how we came home one night at 5:30, and it was getting dark. My son was having a hard time and he was running down our street. He ran past the two neighbours I know very well, who understand his issues.

My first thought was what if someone calls the police, and says ‘there’s this black kid in the dark running down the street.’ We have a police station within walking distance. I thought if the police got to him before me, there was a chance that things would not have gone well. Being a black male is definitely a safety issue over and above having autism.

BLOOM: We’ve certainly seen stories of autistic youth or adults who are assumed by police to be doing something illegal, because they won’t comply with what the police ask, or they have certain behaviours, or they aren’t able to explain their situation.

Sazini Nzula: That happens everywhere, whatever the race of the person. What I see as an extra factor is my black child who looks out of place in our neighbourhood. He might not be able to comply with the police commands, or, because the police speak in French, he might not understand. Even if he is spoken to in English, he might not be able to process it. Now that’s my big fear.

BLOOM: I understand you have tried to develop a relationship with the police?

Sazini Nzula: I’ve been taking my kids to the local police station since my son was four. My idea was to get my kids used to seeing the police as their friends, and to develop a relationship with the community relations officer, so that if anything happened in our neighbourhood, they would be the first to respond.

I called and explained I had a kid with autism and was wondering if I could drop by. I said I was teaching my son that police are safe people they can approach. Our experiences were good. What I’d love to do in future is go and do an actual presentation.

BLOOM: What advice would you give other parents raising black children with autism?

Sazini Nzula: My biggest fear is involvement with the law. We have to develop an understanding with law enforcement to make sure our kids don’t get hurt and make sure our kids are understood.

I have a nephew who is able-bodied and well functioning, and I’ve seen situations where he’s not treated well by police, and he’s done nothing. When I put the disability on top of being a tall, strapping, black male, we really have to be aware and be vigilant and empower our kids.

BLOOM: Do you talk to your sons about racism?

Sazini Nzula: With my older son, he’s not at a level of social awareness where he would notice if it happened. So for now I tell him if he feels he’s in trouble or not safe, to call mommy or to call the police. We’ve talked about calling 911 in an emergency, and my kids are good with numbers and use their cell phones.

In Grade 1, a student told my younger son ‘brown people are dirty and stupid.’ So I did talk to him about race. In his school, which is a public school, there aren’t that many people who aren’t white.

BLOOM: I loved one of your blogs where you talked about having a jar that you regularly drop memories of awesome things your kids do into. Can you explain?

Sazini Nzula: It’s a way to focus on the good things. Last year, when I think of my older son’s school year, I remember all of the calls from the psychologist, all of the meetings, and all of the really negative stuff. Plenty of awesome things happened, but I can’t tell you specifically what happened at school.

I thought this year I’m going to make sure I remember. Yesterday, we went to see the movie Peter Rabbit. For us, that was the first time we saw a movie that’s not adapted. It was for anyone, and there were lots of kids, and the sound wasn’t reduced. My son sat through, even though he forgot his headphones. That was awesome for us.

So I write the date on a sticky paper and write something that stands out, and drop it in the jar. I think it will make me even more aware of when awesome things happen. I’m capturing them, and I appreciate them more.

My plan is that if we go through a really challenging time during the year, I will pull them out to read and remember all of their victories. And certainly at the end of the year, we will read them to remember what happened.

BLOOM: You just released a book. What's it about?

Sazini Nzula: It’s to acknowledge that it’s difficult, but that as parents we need to embrace the uniqueness that our kids bring to the table. One of the subtitles is: ‘How to embrace the unique way your child is flourishing.’ So the message is that you need to go with your child, whoever they are, and still live your dream.

BLOOM: Is the book only relevant to parents of children with autism?

Sazini Nzula: No, it’s useful for parents of children with other disabilities. There’s a practical chapter, for example, on preparing your kids for adult life, and preparing yourself, the parent, with financial and estate planning.

BLOOM: Do you talk about race in the book?

Sazini Nzula: I do talk about the stigma of autism or disability, but not in the way of race. I have a chapter called ‘Life in An Autism-Unaware World.’ I had originally written about race, but the editors suggested I make it more relevant to everyone and I took it out. I plan to publish those sections on my blog instead.

BLOOM: I think there would be a real appetite for your writing in that area. I know I’d be interested!

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A girl who wanted to disappear becomes 'The Pretty One'

By Louise Kinross

Keah Brown is an American writer working on a book called The Pretty One, which is a collection of essays about living as a disabled woman of colour in a white, abled world. Keah studied journalism at the State University of New York at Fredonia and lives in Lockport, N.Y. She’s a senior entertainment writer at ClicheMag.com, and her essays have been published in The Rumpus, Harper’s, Teen Vogue and Lenny Letter. I first heard about Keah a year ago when she launched a photo campaign with the hashtag #disabledandcute on Twitter and it went viral. I wanted to talk to her about the impact of racism and ableism when she was growing up.

BLOOM: How did your experiences as a black, disabled woman figure into your desire to write?

Keah Brown: Writing is something I’ve always done. Even in secret, when I was growing up, I had little notebooks that I’d write songs in. And the songs would become poems, and the poems became stories, and it was a natural progression.

When you grow up not seeing yourself represented in any form of media outside exploitative telethons, you get the urge to say ‘Hey, that’s not how any of this works.’ I’m here to tell my story because I don’t want to be forgotten, or be assumed to be a certain way when I’m not.

The Pretty One is about our need to change the culture and the ideas that shape the way we see disability, because they’re harmful. The Pretty One is about joy, and about finding a way to the other side of what is self-hate or poor self-esteem.

The narratives we usually see are about people with disabilities who hate their bodies. We often see that in movies, where a disabled character wants to die. I wanted to showcase how someone who feels those things comes out of it—and the work that takes—and the process of getting to be a person who is very much joyful and happy and full, in a way she never was before.

Obviously there’s going to be a bit of heartbreak and loss and grief. But ultimately The Pretty One is about joy.

BLOOM: So the book is written as a series of essays?

Keah Brown: It’s a collection of 13 personal essays, at this point. I'm not sure if that will change. We’re shooting for a release date of spring 2019.

BLOOM: You’ve written about having cerebral palsy. How does it affect you?

Keah Brown: I have hemiplegia, so it affects my right side. I’m able to walk, but I need to take breaks, and I get aching limbs and arms and hips. But at this point, I don’t use a mobility aid.

BLOOM: Last year you wrote a beautiful piece on Roxane Gay’s book Hunger in The Rumpus. It begins like this: ‘There’s a moment in every day where I think of my younger self—the fifteen-year-old me, the sixteen-year-old me, and the twenty-year-old me who prayed morning, noon, and night to be rid of my body. When I was younger, my scars, bruises, bent fingers, limping leg, and crooked lips disgusted me.’ In the essay, you write about your desire for invisibility when kids would ask you what was wrong with your body.

Keah Brown: Because I wasn’t surrounded by many other disabled people, let alone kids, I saw my disability as this thing to run away from, or to try to pretend that it wasn’t there. I had a very happy childhood from kindergarten to Grade 5, and Grade 6 was when I realized I had a disability.

With my other siblings—I have a twin sister and a brother—they’re able-bodied and my mom never treated me any different. Whatever they got I got, and we never talked about my disability in terms of it being this difference and that difference was bad.

Then when I got to middle school and kids made fun of me in the cafeteria, it kind of stuck with me. If someone made fun of this thing that was different, then it must be bad. So I spent a lot of time wishing to be invisible and wishing that I would wake up in another body. I felt I was being punished in the body I had. I wanted to be just like everyone else and to blend in. I was tired of people asking questions and staring at me.

BLOOM: What would you tell other children whose differences make them want to disappear?

Keah Brown: The best advice I can give is that they are who they are, and all that they are is enough. It’s not only enough, but it’s beautiful and worthwhile, and their bodies tell a story. It doesn’t matter if they don’t look like a certain person, or look a certain way. What matters is that they figure out who they are, and celebrate that. That is the person they're stuck with for the rest of their life, so it’s important that they learn to love that person.

BLOOM: You’ve written about how when children don’t fit conventional European white standards of beauty, there’s almost an expectation that they should hate their body.

Keah Brown: Absolutely. There’s this idea that if you’re different you should feel bad about being ‘other’ and breaking the mould. When you do that, people don’t know what to do with you. They assume you don't know what to do with yourself, and you should be uncomfortable, because they’re uncomfortable. To those of us who are different, our differences make us unique. Those unique things make us who we are, and who we are is enough.

BLOOM: You created the Twitter campaign with the #disabledandcute hashtag. What did you hope to achieve with that?

Keah Brown: I didn’t hope to achieve anything. I started it for myself and posted four pictures and the hashtag, just to celebrate myself and other disabled men, women and non-binary people. I wanted to say ‘Hey, I finally feel good in my body and you should too.’ Then I left Twitter and went back to an essay I was writing on a deadline.

When I came back, #disabledandcute was trending. By the end of the week I was interviewed by a bunch of different publications, and I learned that #disabledandcute went viral and spread from Twitter to Facebook to Instagram and Tumblr.

I began it to try to celebrate myself, but it became a thing where all disabled people could celebrate themselves. That’s what I’m grateful for. It will be a year this Monday that I posted it.

BLOOM: As a child, how did you experience racism and ableism.

Keah Brown: I didn’t really know what they were as a child. People would speak to me really slowly and would be condescending, as if they assumed I didn’t understand them.

I was never ashamed of being black and in terms of racism, we were sheltered from most of that in my childhood. There were small comments that people made. But never anything that I really had to internalize or keep to myself, in the way I had to with things people said about my disability. Disability as a 'bad' thing outweighed my blackness.

I was always very proud of being black and confident that being black was something beautiful. I grew up in a household of other black people who loved themselves, so I loved myself too. Our blackness was something we had in common, whereas disability was the thing we didn’t share.

I felt disability separated me from my twin sister. I just wanted to be like her and look more like her. I wanted all of these things I thought she could have that I couldn’t have.

BLOOM: Was disability accepted in your family?

Keah Brown: I did feel accepted. I have a humongous family and they were very much always ‘That’s just Keah. It’s who she is.’ My disability wasn’t like a thing that people were weird about. It was what it was. It wasn’t something we addressed or ignored, or pretended that it wasn’t there. It was seen as an aspect of me, but it wasn’t all that I was.

BLOOM: Did you ever feel your disability was marginalized in the black community?

Keah Brown: Not really. The majority of the comments I received as a child—and even now—come from white people. People of colour tend not to say much to me about my disability, unless they know me. The stares and the mocking and the talking slowly is a thing a lot of white people have done. Most of the rough experiences I’ve had have been from white people.

BLOOM: You’ve written about lack of accessibility. What message does it convey to people with disabilities?

Keah Brown: In my freshman year in high school I had a big surgery, and then I had to come back a year later and have a plate taken out. That’s when I realized how inaccessible the building was. There was a kid named Mason who used a wheelchair and I used a walker, and we had to go to the back of the school just to get into it. The elevators were really slow and it took us longer to get everywhere.

These are all things abled people take for granted—that they can get to and from places without any problem.

Today, it's still a really big issue for me. I can’t get down the stairs safely in a mall. Going up the stairs is fine, but coming down I have to reach my left hand over my right arm to hold the rail.

What was good in my childhood was that there were always people around to help me before I knew I needed help. They helped me figure out ways to trick an inaccessible system. That's how I figured out how to put my left hand over my right one to get down stairs.

Or if I’m standing for a long time, I shift my weight from left to right so that my whole right side isn’t aching by the time I move again.

I spend a lot of time in my house, which is very accessible, and in my room where I write. It’s a single level house with a basement that's easy for me to get down to.

I’m able to figure out how to navigate in my own house. The issue starts when I get to public places and they don’t have the same accommodations.

BLOOM: I read that you went to a largely white high school and college. How did that affect you?

Keah Brown: I think what I know now I couldn’t articulate then. When you don’t see enough people who look like you during the day, you start to retreat into yourself. Even though there’s nothing wrong with my black skin, you keep some things to yourself, because you’re trying to navigate a world that's vastly different from the one you knew before.

In a primarily white institution, I was taught mainly about white writers and journalists. I had to look outside the classroom for writers of colour, and to find heroes of my own who looked like me.

The way I handled those experiences was to lean on other people of colour who could commiserate with me. They understood what it’s like to experience multiple micro-aggressions from other students.

BLOOM: Were these people outside the school?

Keah Brown: No, they were the few other black students. We’d acknowledge each other with a head nod and eat lunch together and go to the movies and hang out.

BLOOM: You said that your book is about the process of getting to a point where you love your body and celebrate it. How did you get to the other side?

Keah Brown: Girl, a lot of tears and definitely counselling, and trying. I tried for the first time. What I’ve found is that sometimes you want something but you don’t really work for it. I had to really confront my own problems with disability, and not just my own disability.

I had to confront my own internalized ableism and views about what disability is and what it can be in order to make myself a better person.

I got tired of living my life like it was the world’s worst punishment. I got tired of getting up and feeling like ‘I hate you, you’re ugly,’ and insulting a body that was doing the best it could to keep me alive.

I thought I was giving myself these insults to prepare myself for when other people said them. But it never made me feel better.

I had to actively try to be kinder to myself. I found something I liked physically and mentally about myself, and worked every single day at it. Self-love and self-worth is an everyday practice. This is not a one-time thing. It’s a constant.

BLOOM: You mentioned counselling was helpful. Was it hard to find a therapist who understood about disability?

Keah Brown: I went to counselling at college because it was free. The first counsellor, while I’m sure she was a lovely person, didn’t work out. She treated me as though my self-hatred was something I should just be over.

That’s an issue that sometimes happens when a person doesn’t have physical disabilities. They don’t feel comfortable around disability, so they want you to be over it, and not talk about it.

The second counsellor I had was brilliant and did a really good job.

Counselling helps. I also had to do a lot of internalized work where I acknowledged that I’d met these disabled people online that I love, and they mean the world to me, and it was time to start looking at myself with that love.

Throughout my time of self-discovery I also read books and found fictional characters to fall in love with and grow with. I found bits and pieces of things they did that I thought I could emulate.

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A social worker who's lived the other side of rehab

'They tell me that it's different working with me'

By Louise Kinross

Gabriella Carafa is a social worker whose connection to Holland Bloorview goes back to her childhood, when she visited our neuromuscular clinic. Eleven years ago, Gabriella participated in Holland Bloorview’s The Independence Program, living for three weeks in a university residence to learn a variety of life skills. Since then, she’s worked as a youth facilitator at The Independence Program and at our Youth Weekend Retreat.

Three years ago she came on board as a social worker in our child development program, working with work with youth with cerebral palsy, spina bifida, spinal-cord injury, craniofacial differences and complex medical needs. She also provides social work support to young adults in The Independence Program.

BLOOM: What drew you into this field?

Gabriella Carafa: I wanted to be a social worker because I’ve always been interested in people’s emotions and supporting them to cope with their life experiences. I thought I could contribute greatly to working in children’s rehab because of my rich lived experience, in combination with my clinical skills.

My clients say it best when they tell me that I understand things and they don’t feel like they need to explain as much to me. They don’t have to explain about the frustrations around accessibility, or how hard it is to go out with your friends, because I understand. They tell me that it’s different working with me.

BLOOM: What are some of the common issues they bring to you?

Gabriella Carafa: The common issues are around acceptance of disability and self-esteem. Anxiety is a huge one and depressive symptoms, even if they don’t have a formal diagnosis. As they’re getting older, they recognize more things that they can’t participate in in the same way as their peers.

BLOOM: Do they also recognize the stigma of disability more?

Gabriella Carafa: Yes. If it’s not overt, it may be that they’re not invited to parties, because people assume they can’t go up the stairs, for example.

It’s not one of these things, but a combination of them: dealing with anxiety and depression and feeling like they don’t fit in or it’s hard to fit in.

BLOOM: What is the greatest challenge of your job?

Gabriella Carafa: My greatest challenge is supporting youth with complex medical and cognitive disabilities in their transition to adult services. In the adult realm, there are long wait lists for services and funding. For families who maybe had funding in the children’s system for respite—that ends at age 18.

Sometimes I feel helpless. I try to make families aware of all of the funding changes as soon as possible, and look at ways they can manage by increasing their support network and connecting with other families to advocate for system change.

BLOOM: What do you love about your job?

Gabriella Carafa: So many things. I think social work is a privileged profession. I’m a big believer in being vulnerable and being real, and in social work most of the time you see people at their most vulnerable, when they’re going through a tough time. I get to witness the strength of clients and families.

I ask those questions that other professions may not be asking, like ‘How are you coping?’ or “What has the impact of the diagnosis been on you and your family?”

You’re normalizing feelings they may not want to admit to other people.

Parents may be ashamed that they’re not coping well, and you create that space where they can just be honest without guilt or fear of judgment.

BLOOM: How do you cope with some of the emotions that come with your work?

Gabriella Carafa: I am working on not taking the work home. That doesn’t mean I don’t care. Making sure you have activities you do outside work that you enjoy is important. I also have a lot of social worker friends—some here and others not—and we can lean on each other for support.

What’s hard is when families think I should do more to change all the systems in adult services. When families want me to do more than I can, it’s hard on me.

I feel proud that I do this work and I feel I make a difference by creating a safe space and providing families with the information they need. They feel they have someone in their corner.

BLOOM: I know you also supervise social work students.

Gabriella Carafa: I hope social workers coming into the field have a better understanding of disability, and I work hard to provide that both as a social worker and as a person with a disability. I can educate future social workers around disability and the stigma that comes with it. I support them to develop an anti-ableist practice.

BLOOM: You said your understanding of independence has changed since you went to The Independence Program as a client.

Gabriella Carafa: I recognize that our traditional ideas about independence aren’t possible for every client, so why are we thinking about independence this way? With medical advances, a lot of youth with complex needs are living longer.

Until I began working as a social worker here, I didn’t have a thorough understanding of the wide variety of disabilities our clients have. Most of the youth I work with have complex needs. Many won’t go to post-secondary education, move out on their own, get a job, or volunteer, and that’s okay.

Even the people who are going to The Independence Program have changed. We have more people with cognitive, rather than just physical, needs. These are individuals who may never live independently in the traditional sense. But that doesn’t mean they can’t build skills and recognize when they need support.

BLOOM: I was speaking with a colleague whose family is from Ethiopia. She said our obsession with ‘independence’ as the end goal of life is hard for them to understand.

Gabriella Carafa: Western ideas of independence are not reflected in many of the cultures we serve here. And whether or not you have a disability, people are living with their parents, spouses, children and grandparents, and the families are interwoven and interdependent. Why is that a bad thing?

On the other hand, we do have situations where the youth wants to be independent, but culturally the family doesn’t believe in that. They don’t want their child to move out.

Some parents experience grief when they realize traditional independence may not be possible for their child. However, that doesn’t mean there aren’t other possibilities for having a great life as an adult. That’s why we need to continue having transparent conversations with our clients and families that explore what is possible.

BLOOM: If you could change one thing in the health system, what would it be?

Gabriella Carafa: Adult services as a whole. I think we do a really good job in the children’s system, and adult services need to reflect that. I wish the adult systems were better connected and that adults with disabilities had more funding available to them. And I wish the systems reflected people with diverse identities and needs. Ha—that’s a lot!

BLOOM: What have you learned from families?

Gabriella Carafa: That they’re resilient. That’s what I’ve learned.

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Aren't humans more than what we 'do?'

By Louise Kinross

“What do you do?”

It’s a question I used to ask when I was young and meeting someone new at a party. It was a way of learning about a person, but, if I’m honest, it was also a way of measuring them. What were their interests? How educated were they? What kind of job did they have?

I can’t remember the last time I’ve used that line. I imagine it dropped out of my vocabulary over the last two decades, since my son with disabilities was born.

I sometimes ask people now, “What do you enjoy doing?” but that is a whole different question.

I am sick of our culture’s obsession with what people can “do” as individuals and how it’s used as the measure of human worth.

It’s this logic that’s devalued people with disabilities, who may not be able to do the same things as those without, or who may do them in an unconventional way or with the assistance of a guide dog, technology or other person.

If we are to value human diversity, then surely we need to let go of a concept of human worth based solely on individual ability and performance.

Aren’t we more, as people, than what we do?

I believe we are, and this is why I’m disheartened when someone attempts to convey the value of a disabled life (yes, I’m using that phrase because of the SayTheWord: Disabled campaign) by trotting out all of the things a person can do.

The latest was this story by Rachel E. Adams in Pacific Standard Magazine: My Son Has Down Syndrome—Stop Telling Me He Has No Future.

Rachel is a Columbia University professor and author of Raising Henry: A Memoir of Motherhood, Disability and Discovery. She's written in BLOOM.

In the Pacific Standard piece, she talks about how medical specialists and others paint a negative view of what people with Down syndrome or more severe disabilities can do as children and adults.

She says it’s this reasoning that feeds in to the practise of parents who stop the growth of their children with severe disabilities through surgery and hormone treatment. Because it’s assumed these children have low intelligence and little capacity to do anything in the future, why not make them child-sized for life, and easier to carry and take care of?

She then contrasts this with examples of what people with severe disabilities and her son have, in fact, been able to do.

For example, she talks about Ruth Sienckiewcz-Mercer, a child diagnosed as an “imbecile” by doctors after brain inflammation, who later was discovered to be able to communicate in a rich and sophisticated way through the use of her eyes.

She notes that author Michael Berube's son Jamie, who has Down syndrome, accomplished most of these things that utilitarian philosopher Peter Singer deemed impossible for a person with an extra chromosome by the age of 14: “We cannot expect a child with Down syndrome to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer or tennis player.”
  

We learn that her son Henry, at age eight, “can read and write; recite whole episodes of The Muppet Show by heart; swim across the pool; and just started his first season of Little League.”

I think this is fabulous.

But what does it have to do with her son’s worth as a human being? Would he be less valuable if he couldn’t read and write at age eight, or swim the width of a pool? Do we need to “do” things to justify or enjoy our existence?

I agree with Rachel that it’s wrong for health professionals to “deny the possibility of an open future” for children with disabilities. All children and families deserve to dream about living a great life.

But why tie a great life to conventional success? Is that useful, or healthy, for anyone—disabled or not?

What about dreaming of a world in which your child feels worthy and that he or she belongs? What about a world in which your child feels “good enough” just as they are, and not contingent on their next big “win” or mark?

At the end of her article, Rachel talks about how she used to seek out adults with Down syndrome to help her imagine what her son might become in the future. But then a therapist set her straight: “Henry’s future is going to be completely different,” the therapist said. “With all the therapy he’s getting, and the educational opportunities available today, who knows what he’ll be able to do?”

Again, with the emphasis on doing as in “I do, therefore I have value.”

This therapist actually denigrates the value of adults with Down syndrome by telling Rachel that her son will “do” so much better.

Which brings me back to what a tragedy it is that we can’t move past conventional notions that link human worth and ability.

Isn’t value a birthright? Does it really have to be earned through what you do? Is our worth always fragile and teetering, given that at any moment we could lose our abilities due to illness or accident? 

Do we really want to make respect and dignity conditional on how a person performs? In other words, if you're not able to do x, y, z, then I have no respect for you?

Why is it that we can’t assign value to each person, simply because they’re human?

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