Living in an ableist world gives disabled student a unique outlook

By Louise Kinross

Amina Aumeer is a social service worker student at Seneca College who just finished a four-month placement at Holland Bloorview supporting our Client and Family Integrated Care team. She worked closely with Adva Budin to administer the family support fund and our family accommodations. Amina and her twin sister Aaliyah—who have cerebral palsy—have been receiving services at Holland Bloorview “ever since I can remember,” Amina says. “I knew my client experience would add to my success here, but I didn’t realize how much it would contribute.”

BLOOM: What was the greatest challenge growing up with cerebral palsy?

Amina Aumeer: Having to prove to everyone that I’m still capable, regardless of my physical challenges.

BLOOM: What’s an example?

Amina Aumeer: Throughout school, I felt like I had to work three times as hard as others just to get the basic successes that everyone else had. Due to my disability, typing is a struggle. Watching you type right now I get so envious. Homework that would take someone else three hours to do could take me a week to two weeks. I still type, but I dictate my papers to a family member who types them.

BLOOM: Did you try any speech-to-text technology?

Amina Aumeer: I’ve tried Dragon Naturally Speaking and Speech Q, but neither of them are easy. With Speech Q it uses predictive text. That interferes with my thought process, because when I need to pick a predicted word, I forget the thought I had. Dragon takes a lot of practice.

I use my thumbs and fingers to type on my iPhone. So if I don’t have someone to scribe a paper for me, I will type my thought process and notes for the paper first on my iPhone. Then when I have to type them out, I can focus just on typing.

From a very young age, my parents were very honest and upfront about the barriers we’d face that might cause us to not have as much success.

Some friends and care providers told them they should be giving us more hope, but they said unrealistic or false hope was dangerous.

On top of our physical challenges, they talked about racism and being a woman. I also practise the Islamic faith, so that was another barrier. Intersectionality is the word we use at college.

BLOOM: Do you feel you are marginalized more in one of those areas?

Amina Aumeer: When I was young, my parents told me that my faith could impact whether or not I got a job, or whether I got into an academic program. As I get older and am in the real world, I’m seeing that kind of polite racism and polite Islamophobia.

My name Amina is a very prominent Muslim name. In high school, when the terrorist attack happened with ISIS in Paris, I got asked if I was a terrorist. I also had an incident with a caregiver where she basically got into a debate with me about how my religion is associated with terrorism. To always have to explain that it’s not can be trying.

BLOOM: I know you live far away from Holland Bloorview. How do you get here everyday?

Amina Aumeer: I live in independent living in Vaughan, with attendant care from March of Dimes. This morning I left at seven and got here by 10. I get picked up and dropped off at a mall that borders on the Toronto boundary. Then I have to wait for an hour to be picked up there and driven here. It’s a long way, and a lot of people, including my parents, said it wouldn’t be possible.

BLOOM: I can’t imagine how frustrating that journey would be.

Amina Aumeer: Actually, I’m kind of desensitized to ableism. I’m picking my battles, and the small things, which are not small things, I become used to. Just the other day I was at school and I wanted a Frappuccino from Starbucks and the barista wouldn’t acknowledge I was there. I was waving my money and saying ‘Hi, I have an order,' and she ignored me. So I went to Tim’s. As I was leaving the store, I could hear people saying ‘She was actually in front of me.’

Another example is if I’m taking the public bus, and the bus driver knows I’m the first in line. But he’ll let all of the able-bodied people on first because it’s easier, and I’m stuck out in the cold.

BLOOM: So you need to use the lift on the bus?

Amina Aumeer: Yes. The driver will acknowledge me and then tell everyone else to come on first. I’ve also heard drivers who are running late call me a wheelchair: ‘I have a wheelchair’ they’ll tell the dispatcher. I’m not a wheelchair.

BLOOM: How did you decide to go into social work?

Amina Aumeer: My mom is a social worker, and she inspired me. But my reasons for being a social worker are very different than my mom’s. My mom is a counsellor who works one-on-one with people in a shelter. I want to work with people with disabilities, but while I’ve been at Holland Bloorview, I realized I want more of a management role. I’ve learned that I’m very good at paperwork and capable that way. This has been my first work experience ever. Going into the placement, I thought if I have to do a lot of paperwork, my supervisor will be frustrated with me, because I can’t do it fast enough. But since being here, I’ve found ways that I can do the work in my own unique way.

What I love about Bloorview is that I’m not seen as a person with a disability or as an employee with a disability. I’m just a student. It’s such a unique place to work because people aren’t hesitant to approach me or speak to me the way they are in the real world.

When I was calling other organizations about placements, they said they didn’t know how they would accommodate me. My fear was that I’d be micro-managed and miss out on experiences because someone would say ‘Amina can’t handle this because of the chair.’

The first week here I worked with Addy as my supervisor and we figured out what I was comfortable doing. After that she said ‘Okay, I trained you, now you go and do the task.’ That was refreshing.

BLOOM: Why are you more interested in administrative or management work, as opposed to counselling?

Amina Aumeer: Before coming here, I thought I’ll become a strong advocate and work with families from a ground-work perspective. What I’ve learned is that I think I would have more of an impact working with a team of people.

Being involved in team meetings, and seeing the struggles and successes of managing a team, I’m thinking I could do something like that. Working here has given me so much opportunity because I work with a diverse team. I’ve been exposed to all these different areas. Whether it was Lori Beesley managing a team of family leaders, or Melissa Ngo, facilitating workshops.

BLOOM: Have your thoughts on disability changed over the years?

Amina Aumeer: I had a meeting with Jean Hammond and we were talking about disability as an asset, not an obstacle. As soon as we start seeing it as an asset—as lived experience—then everyone’s perspective automatically changes.

BLOOM: How has your disability been an asset in your work here?

Amina Aumeer: I was able to give feedback from a client perspective on the family support fund. I can connect and relate to parents’ experiences. Of course you can’t know everything they go through, but to be with them and empathize and be an ally, to the best of your abilities, and to hear their stories and feel their stories is the most important part. With the work I’ve done with Melissa with Parent Talks and Addy with Family Accommodations, I’ve learned that often parents don’t want to seem vulnerable. But allowing them space to express emotion, and knowing that emotions are temporary and that we can work through it along with the physical aspects of care, is important.

I realized that I knew a lot of terminology parents use—like Motion Specialties, and ADP and ACSD. When I went back to school and we had to debrief to the class, what I said was going over everyone’s head, because they weren’t familiar with these terms. For me, it’s just part of my life.

When I was in my interviewing class, my classmates said that the words I used and my body language were unique to my disability. So, for example, I can’t lean forward when I’m interested, but my tone of voice will become more enthusiastic. When my classmates tried to copy what I do, it didn’t translate well. My professor brought up disability culture, and said that the way I interact with able-bodied people and disabled people is unique to my own experience.

BLOOM: What do you enjoy doing separate from disability work?

Amina Aumeer: Advocacy consumes my whole life. I’m part of the youth advocacy committee with the Ontario Advocate. I’m in their We Have Something To Say report. I like Instagram, but I always end up posting stuff about disability advocacy. I was a panelist in the Bloorview workshop Creating A Life Your Child Wants. You saw the York Region newspaper article I did about problems with transportation? I love volunteering and giving back.

Learn more about work programs at Holland Bloorview.

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Medicine is 'ultimately a humanistic and human endeavour'

Photo by Julia Soudat for U of T News

By Louise Kinross

Last April, Dr. Arno Kumagai became vice-chair in education for the Department of Medicine at the University of Toronto. He’s an endocrinologist from the University of Michigan who studied the molecular mechanisms of diabetic complications before turning his attention to medical training. At the University of Michigan Medical School, he developed a course that paired students with patients for regular visits at their homes, to hear firsthand what it means to live with a chronic illness. He continues to run a small clinical practice as a diabetes 1 specialist. Dr. Kumagai is giving a keynote presentation at Holland Bloorview’s Teaching and Learning day on March 8 called We Make The Road By Walking: Stories, Dialogue and the Possibilities of Care. BLOOM interviewed Dr. Kumagai about how stories can influence care.

BLOOM: In your education role at U of T, you talk about the importance of the human elements of medicine.

Dr. Arno Kumagai: Because we deal with people, medicine is fundamentally an ethical activity. We have to take into consideration that we’re dealing with another person with a background, personal values and relationships, and we need to have that first and foremost in our mind at all times. Often, it’s easy to forget that when we’re looking at numbers and physical or physiological processes, and how sometimes they can go wrong, or cause issues with function.

The bottom line for me is that yes, medicine involves science, but it is ultimately a humanistic and human endeavour. Where we often go wrong is when we treat other people as objects. We assume we know who they are, and what they want, and how they would prefer to live their lives. By making assumptions, we may be completely wrong, and we impose our own values and perspectives, without asking ‘What is it that’s important to you, and how can I help you?’

BLOOM: I understand you’re talking about the importance of stories at our Teaching and Learning Day. How can stories influence care?

Dr. Arno Kumagai: In teaching medical students and physicians in training, stories have a really powerful educational role, but not only that, they have a very powerful human role. Stories are human beings’ most effective way of communicating the meaning of experience. The way we transmit meaning from one person to another or one generation to another or one group of people to another is through storytelling.

In patient care, doctors tell each other stories about patients using a specific type of language that is very different from the story that a person with a chronic illness would tell about themselves. The patient’s story may be unrecognizable to the clinician, and the clinician’s medical history may be only vaguely recognizable to the person who actually experienced it.

Often times, physicians see things only in terms of impairment of function, but it’s really the stories of the obstacles that are encountered in society and daily living that they need to hear. I work with people who have diabetes and, as a result, have disabilities, and it’s through their living stories that we understand the challenges they face. It’s not just a matter of ‘I can’t get upstairs’ or ‘I can’t hear someone talk when I’m in a crowd,’ but ‘I’m afraid to tell my classmates that I have diabetes because I don’t want them to look at me differently.’

Stories help us to begin to take the perspective of someone else and to really explore our own way of thinking and living and to reflect on who we are. The other thing with stories is that they often contain surprises. They tell us something we weren’t expecting, or that goes against our assumptions and beliefs. They have the potential of making things strange. You take an assumption and a story may challenge that assumption.

BLOOM: How are you incorporating stories into the medical curriculum at U of T?

Dr. Arno Kumagai: My work in the past at the University of Michigan was with first and second year students. But most of my work here is with post-graduates.

One of the important ways we incorporate stories is by dialogical teaching. We’re very interested in the power of dialogue to open perspectives and new ways of seeing. We train clinicians to use moments of dialogue in the clinical environment to stimulate reflection and storytelling.

We don’t pull people out of the clinical environment and give a lecture, we train faculty to ask questions as part of rounds, or on the fly.

BLOOM: I read a paper where you talked about the importance of creating space for medical students to talk and reflect about both ‘the tragedy and wonder’ of medicine. And that these spaces don’t involve a specific location, but are more like mental pauses that take place in the corner of a ward at any time of the day.

Dr. Arno Kumagai: Yes. As an educator, what is the one question I want to ask a student that will get her to think about the social or humanistic or social justice issues about a patient?

Let’s say an attending physician tells me: ‘I have a 34-year-old woman who’s a single mother of a young child and works downtown at a restaurant. She has type 2 diabetes and is non-compliant with her medicine.’

I would say: ‘What does non-compliant mean to you?’

‘She’s not following what we asked her to do.’

‘Well why?’

‘I don’t know.’

I would encourage the person to think about who this patient is, and what she does. She works in a restaurant and is a single mother. Restaurant workers in the U.S. don’t make enough money to afford insurance, but make too much money to be on public insurance. It’s likely this single mother has no insurance and her medicine costs her upwards of $300 to $400 a month. So it comes down to whether she feeds her kid or takes her medicine.

You want the experiential part of the student seeing the person in front of them tell a story about how they struggle. And for many it will trigger an empathic response of ‘Wait, something is not right about this, and I need to do something.’

BLOOM: You said there’s a distinction between a dialogue and a discussion.

Dr. Arno Kumagai: A discussion is more goal-oriented. It could be about a treatment or discharge plan, and there’s a solution at the end of the discussion.

A dialogue is very different. You bring in your whole self—your background, your values and experiences—and interact with someone in a way that may not result in a single solution. In fact, it may spark more questions or avenues to explore.

For example, if I’m an educator in the ward, I may want to tell a story to residents of an ethical dilemma I’ve run into, but not tell them the ending of the story.

You want to get them to really engage themselves and think deeply about what would they do? Their values, and the way they look at life, may be very individual, so they bring that all in and talk about it. You introduce stories and talk about paradoxes and ask ‘What would you do?’

I don’t want the attending physician to assume ‘I have the right answer.’

BLOOM: It sounds like you’re encouraging them to be able to think more flexibly.

Dr. Arno Kumagai: Health-care providers often assume there is one correct answer and they get it and give it to the patient. Instead of seeing that there are multiple voices constructing the truth through an exchange. That becomes a very different picture that is much more fair and democratic.

When I see a new patient as a diabetes specialist, I’m very cognizant that I need to engage in a dialogue with that person. One of the first questions I ask is ‘What is it that you do really well?’

Some are musicians or runners or video-game players or artists and they’ll start talking about that, and it gives me an idea of who they are and then we’ll talk about diabetes. I want to figure out their strengths, instead of their deficits, and build on them.

It’s an exploration, a partnership, a collaboration. We’re trying to figure out what works for them, with their input.

The answer will be different for different people. That’s why cookbook approaches in many ways don’t work.

That’s very different from thinking I’m the expert, and I have 45 minutes to figure out a solution.

BLOOM: So, in fact, the answer can’t be found by the doctor in isolation.

Dr. Arno Kumagai: No, it can’t. A monological approach is often how we think about medicine: doctors have the answers and patients come for the answers. You can sit in a room by yourself and use analytical skills that are often purely cognitive, and have wonderful thoughts. But that doesn’t involve an exchange with another person who has a background and history, and the doctor actually committing to engage his or her own background and history and perspectives.

I always tell patients that I know a lot about delivering insulin and the complications of diabetes and challenges of treating it. But I know virtually nothing about living with diabetes. And I’m not going to presume I do.

BLOOM: How can we ensure that practising doctors continue to create spaces to reflect on the human and ethical questions of medicine?

Dr. Arno Kumagai: That’s the million dollar question. This is nascent. We’ve been doing this with medical students and graduate students, but what about practising physicians, in terms of continuous professional development?

BLOOM: I was at a meeting here where you spoke about how the best learning is often sparked by the discomfort that a story produces.

Dr. Arno Kumagai: Some of the most effective learning happens when people are forced to question their own assumptions. They’re put into a position of discomfort that disturbs the patterns of assumptions they may hold of themselves and the world. People talk about this ‘stepping out of the comfort zone’ or ‘thinking out of the box.’ Conflicting emotion or experience forces us to think. Not all discomfort is a bad thing.

Dr. Kumagai was recently appointed as the first Dr. F. Marguerite Hill Chair in Humanism Education at Women’s College Hospital.

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A cousin's memory fuels this Kenyan trainee

By Louise Kinross

Susan Wamithi grew up in Nairobi, Kenya. But her medical studies have taken her from Alabama to Grenada to England to Nairobi to Toronto. She’s now in her second year of a developmental pediatrics fellowship at Holland Bloorview. She plans to take what she learns back to Nairobi to develop the first program in developmental pediatrics—caring for children with a variety of physical and developmental disabilities—at Aga Khan University Hospital. 

BLOOM: What drew you into developmental pediatrics?

Susan Wamithi: I grew up with a cousin who had cerebral palsy. She passed away when she was 12. She had spastic quadriplegia and my aunt used to bring her over and carry her up the stairs into our house. She was always smiling and she had really nice hair, so I would braid her hair. Now that I’m learning more about pain in cerebral palsy, I wonder ‘When was she in pain?’ And how did my aunt manoeuvre the transport system, because she didn’t have a wheelchair? We weren’t made to feel she was different from us, and we accepted her disability.

I also had an interest in medicine. When I was eight I was in a road traffic accident and I was hospitalized. I was curious and I loved science, and there was a nurse who explained everything she was doing and that got me interested.

BLOOM: How did you decide to work with children?

Susan Wamithi: I had a neurology professor who motivated me to pursue a career in developmental pediatrics. He talked about the great work that parents in Kenya were doing for their kids with disabilities. Mothers rallied together to have walks where they raised funds for different therapies. Our system is both private and public, but you still have to pay a certain amount in the public system. When I expressed interest in developmental pediatrics, I learned that the dean of medicine at Aga Khan is a Canadian. I met with him and he told me about this program.

BLOOM: Why did you choose Holland Bloorview?

Susan Wamithi: The fact that it’s family-centred. When I looked at the website, it’s seeing the children with their families and seeing the type of support families get. Seeing the funding families get for adapted equipment. That tied in with what happened with my cousin. I kept wondering whether those resources weren’t available to my aunt. I’ve never asked. I wanted to see what those supports looked like. I’m always thinking about how I can take what I’m learning here back home to help our families, where we don’t have enough resources.

BLOOM: Are there many developmental pediatricians in Kenya?

Susan Wamithi: There are only two that I know of. I’m being sponsored by Aga Khan University.

BLOOM: What is a typical day like here?

Susan Wamithi: We’re on blocks of rotations in different clinics. So I may be in the neuromotor or child development clinics.

BLOOM: Do you meet with the families on your own?

Susan Wamithi: Yes, we see clients on our own and then we go back with the staff and present our work. It’s a training program, so if you forgot to ask something, the staff will teach you. You have objectives and you’re taught how to manage different disabilities and the resources that are available here and elsewhere. We provide very individualized care based on a child’s needs.

BLOOM: What is most challenging?

Susan Wamithi: Delivering bad news to parents. I’m a parent myself, and you can’t imagine the type of grief that they go through. I want to be able to give some hope, and find ways to support families so they continue to see their child’s strengths. Some parents will cry the whole time, and others will ask questions and accept that ‘This is it, what’s next?’ If we’re using an interpreter, I always hope that what I’m saying is being interpreted in a sensitive manner. You kind of share their grief. What’s been hard for me is coming from my work as a general pediatrician, where a child has a sore throat, I give them an antibiotic and they come back and say ‘My throat is fine.’ There’s nothing I’m going to write here that’s going to change what happened to the brain in a child I see, and the consequences we’re seeing. That’s emotionally draining.

BLOOM: Do you do anything that helps you cope?

Susan Wamithi: I’m spiritual. I had to come to terms with the fact that I don’t know why this happened to this child, but at least there’s some support I can give them. I ask God to give me the wisdom to know what words to say to this parent. I feel this is such a pivotal point for them, and I don’t want them to change how they see their child. My biggest fear is that the parent will just see what the child can’t do. Or that the parent won’t believe what I’m saying about the diagnosis, and the child won’t be linked up with the right resources. I have to be creative to find a way to take a parent through this journey. From the first time we sit down, I need to gain their trust, and make them see I’m on their side as an advocate for their child. When I give the diagnosis, it’s not me against them, but us helping the child.

BLOOM: What do you love about your work?

Susan Wamithi: I love being able to support families to see their children differently. That’s what I’m passionate about. That comes from my background with my aunt, who was always cheerful. She’d come and bake with us and her daughter was right there and included. I love seeing children light up when I ask them what they’re doing for the summer, because we’re allowing them to be children and go to camps and enjoy their life. I love finding out about resources for families.

BLOOM: Have your thoughts on disability changed since you came here?

Susan Wamithi: Back home I was a pediatrician. So if I suspected a child had autism, I would refer them to a clinic, but I never knew what resources were available in the community. What I’ve learned here is how to support families in finding different funding agencies. In Kenya, we have organizations that raise funds for cerebral palsy and autism. When I go back, I want to work with these organizations to make sure newly-diagnosed patients are connected with them.

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

Susan Wamithi: The waiting times. Imagine the parent whose pediatrician says ‘I think your child has autism,’ and then you have to wait six months to get a confirmation from me. I worry about how that parent is sleeping at night, and how it impacts how they interact with their child. Do they become depressed?

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