Saturday, April 28, 2018

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.


Hi Amina,

I think I remember you from We Have Something To Say.

And that's another reason to go to Tim's - even though the Starbucks linesharers did realise where you were.