Below the Radar Transcript
The Power of Disability Part 4 — with Rabia Khedr
Speakers: Alex Abahmed, Al Etmanski, Rabia Khedr
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Alex Abahmed 0:05
Hi, I'm Alex Abahmed with Below the Radar and you're listening to The Power of Disability with your host, community organizer, social entrepreneur and author Al Etmanski. This is a six-part series of the Below the Radar podcast. The Power of Disability features interviews with special guests, centering the contributions of people with disabilities.
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Al Etmanski 0:28
Hello everybody, I'm Al Etmanski and this is The Power of Disability podcast. Highlighting what history has overlooked: the contributions of people with disabilities. Today's Power of Disability guest is Rabia Khedr. Welcome, Rabia.
Rabia Khedr 0:45
Thank you, Al. Glad to be here.
Al Etmanski 0:47
Have I pronounced your name even remotely correctly?
Rabia Khedr 0:51
Close enough. It's Rabia Khedr.
Al Etmanski 0:58
Okay. All right, I'll have to practice that. Rabia, you were born in Pakistan and lived there until the age of four when you came to Canada. You're a grassroots activist, diversity consultant, motivational speaker, former commissioner of human rights in Ontario, a member of the board of accessible standards Canada, founder of the Canadian Association of Muslims with Disabilities, and I could go on and on. I renewed our acquaintance when you and I were on the Federal COVID Disability Advisory Committee around this time last year. I'm speaking to you today from your home in Mississauga, and I'm really looking forward to this conversation.
Rabia Khedr 1:42
So am I. This is great. Thank you, Al.
Al Etmanski 1:45
So I've just given a really top-level description of who you are. I've heard you say that you're a person of many hijabs. What does that mean? And how would you describe yourself?
Rabia Khedr 1:59
Well, I think it means that I've sort of branded myself with a one-liner over the years, as I've discovered elements of my identity. And you know, they're kind of sequential, consequential, intentional, deliberate — however, I want to package it. So the one-liner that I usually formally introduce myself with in events or you know, talks or whatever I'm doing is, my name is Rabia Khedr, I'm a hyphen with many hijabs. As you mentioned, you know, that, in a Canadian context, to me, means I can have a hyphenated identity. That's the beauty of our multicultural reality, this experiment that we're doing that we are dedicated to making a success out of. This will be our legacy to humanity, that we are a diverse society that strives for inclusion, and embraces our multicultural roots. So a hyphen with many hijabs means I am a Muslim, Punjabi, Pakistani, Canadian, woman, wife, mother, activist, advocate, sibling of individuals with disabilities, daughter of aging parents, consultant, yada, yada, yada, and I happen to have a disability. I happen to be legally blind. And my punch line around that is, “I don't know how you'd be illegally blind.” But apparently, you know, people have come up with legal definitions of what constitutes blindness, and blindness is not black and white. Somebody described it to me as this grey fog, you know, it's an invisible grey. You can't even tangibly say, it's grey. It's not that blindfolded darkness that you would do through experiential learning. So that's who I am.
Al Etmanski 3:54
Thank you. Thanks. That's a much better description, I think, than the one I used. And I think you'd probably get a few laughs when you describe yourself that way.
Rabia Khedr 4:04
I do.
Al Etmanski 4:06
I just want to just stay on this question of descriptions just for a moment. It's not yet commonplace, and maybe someday it will be, to describe oneself visually at meetings or on Zoom calls, if you don't have visual handicap, or if you're not blind. So in that context, I'm an older white male, with not much hair, wearing a blue shirt. When I'm on calls with people who don't see as well or clearly at all, they are requesting those kinds of descriptions of who's on the call with them, as well as clarity around the images and pictures that may be on a PowerPoint or something like that. Do you have an opinion about that? Do you think that should be commonplace? How important do you think that is?
Rabia Khedr 4:53
It's indeed helpful, especially if you know your audience and you know that you're engaging with somebody that may have certain barriers related to a disability. And in my case, specifically, I can't see what's on my screen, I don't have technology that will interpret images or faces for me, you know, in the form of verbage or description. So when somebody tells me, “Hey, this is how I look,” that helps me. Because you know what? You're getting all that visual information about me. It's important that I be given the same information to engage in a conversation. That helps me also place who you are, when you are visually placing me in some sort of context.
Al Etmanski 5:43
Because I've seen you integrate information that's in print, you know, on the spot, in intense meetings. How do you get that information? What's your process?
Rabia Khedr 5:59
Actually, there are pros and cons with this virtual world that we're in right now. In an ordinary circumstance, for example, I might be sitting on my laptop in a meeting and following along with a presentation document or something and speaking to it and stuff. And, you know, sometimes you'll hear me pause and “uh” and “ah” a little bit more, because I'm trying to read. And when I say read, I am listening to a little voice in my ear, reading to me what's on my computer screen. I'm doing that while at the same time paying attention to what's happening in the room. So it's voice-over technology in the context of, you know, the iPhone world, in the context of Microsoft. And as such, there are certain screen reader packages, and I use something called JAWS. And my joke around JAWS is, you know, the reading voice had a name, when I first got introduced to scanners and stuff, that would read aloud text in the early 90s. And this infamous voice was Paul. And over the years, he's transformed to Reid. And I cracked a joke when I did a talk, once in Ottawa. I said, “You know, I have this little voice talking to me in my ear, and I've lived with this guy longer than my husband.” And I go on to say, you know, my technology, like my laptop, I feel I have the right to self defense, if anybody harms my laptop, you know, if there is any damage caused to my laptop, and I react, I have the right to self defense. Because everything in my life sits on this laptop. This laptop, with its technology integrated, gives me that access to the written world, and gives me that access to writing down very pertinent, daily living information for me, from recipes to phone numbers, to contacts, to reports for people.
Al Etmanski 8:11
Thank you. I want to just step back a little bit and poke around in your background some more. What was your favorite thing to do as a child when you lived in Pakistan?
Rabia Khedr 8:23
I don't remember. I came here when I was four. I actually have very little memory of being there. I maybe have some memories that were reinforced by my parents because of the relatives that we left behind, you know, grandparents and aunts and uncles. But I really have very little memory of life there.
Al Etmanski 8:47
So any no smells, or no sounds or anything like that?
Rabia Khedr 8:51
Okay, the weirdest smell... The weirdest strangest smell that I can tell you about is the smell at bus terminals, that gasoline, smelling buses. And the only thing that comes close to it as being at any other bus terminal. But in that part of the world, it's intense, and it's lively. And it's lots of chatter. And, you know, we had to fight to get the transit system to do announcements of stops. And in many cultures and traditions, that's just a part of the liveliness of towns and cities, that the drivers are calling you on to their routes, announcing where they're going. It's almost a way of attracting business. “Come on board. I'm taking you to this town!” So it's a whole different life. So that's maybe one of those sort of distinct memories per se that I would say, you know, I have, but the eye condition I have, Al, is something where I do have visual memory. In the sense of it's a genetic condition from birth. It's recessive. I had sight, but not enough sight. So I was always, quote, unquote, visually-impaired. I don't like the term visually-impaired because I feel like I could be detoxed. So, I know it's a medical term and whatever. But I had low vision. And at this stage of my life, I have no functional vision.
Al Etmanski 10:34
Yeah, you've described one of your superpowers as being fluent in Punjabi, Urdu, and English. And that, in fact, English is your language of power. Knowing you as I do, it's not the only powerful thing about you. And I'm aware that many people with disabilities are now describing their superpower. Greta Thunberg, the climate activist who identifies as a person with a disability, talks about her superpower in that context. Beyond speaking English as your language of power, how would you describe your superpower?
Rabia Khedr 11:10
Again, I struggle with, you know... Some of us were having a conversation around how people label us as inspirational. And my comment in that conversation was that I struggle with some of that language, because from one end, I feel awkward when people say, “you inspire me” or “you're inspirational.” And from another end, when I see people not doing anything, and I don't see them necessarily having the kinds of experiences or barriers that people with disabilities live with. I kind of feel like saying to them, “Look at me, I can do this, why can't you?” So it's a sort of attention, contradiction. But so in terms of superpower, I don't like the super part of it, in that regard.
Al Etmanski 12:00
Okay.
Rabia Khedr 12:00
What do I do? I speak truth to power. I'm not afraid to challenge anybody. And I can give context to that from the perspective that I've had to always speak to get what I need. Nobody was going to speak for me. I didn't have people speaking for me. I spoke for my siblings. I spoke for my mom. So, I've gotten used to speaking for others in my life over time. But I had nobody to speak for me. So I had to learn how to do that as an immigrant child. And this is a reality for a lot of immigrant children — that they adapt and learn quicker than the adults who come with them. And they end up facilitating that role. And becoming sort of that gatekeeper of power.
Al Etmanski 13:01
Rabia, I've read this quote, associated with you. And it's almost contradictory. And this is the quote, it says: “Being blind, I see things differently.” And I am reminded of many things when I think of this. I happened to be reading a book recently about the Enlightenment in France, and philosophers there. One of them is this guy, Jean-Jacques Rousseau. Anyway, he said that he believed that blindness was a social asset. And that he thought that the ability to navigate without eyesight should be an important part of everyone's life, and he felt that children should actually be, and this is the term he used, blindfolded. So they went to that extent, so I don't know if you were touching on that. But “being blind, I see things differently.” What do you mean by that?
Rabia Khedr 14:07
I don't judge a book by its cover. I have to dive into it to figure it out. Or at least read the coles notes version of it or something. For me, I'm not getting all that unnecessary visual information to pass judgment on a situation. If I'm sharing my opinion around the table, I am not influenced by how people are looking back at me. So you know, when I talked about speaking truth power, I mean, and I often say, I do that because I don't see the dirty looks that people give me. So I do speak my mind. And, you know, and with all of this kind of stuff. The other kind of stuff that I have gotten or been convinced to give myself permission to do what I do. It also comes from that spiritual space for me, right? Discovering my beliefs, my religion, the way I identify myself in a very whole way today. And when we're talking specifically about this idea of seeing things differently. When we're talking about speaking truth power, Muslim women are seen as oppressed. And yet, in Islamic tradition, women stood up and spoke to very powerful men leaders in society to challenge their knowledge or challenge their decisions very publicly. So, if that could have happened in that context, “what's the big deal today?” is the way I see it. And, you know, when we're talking about that concept of, you know, when I'm saying, “being blind, I see things differently.” Even within a spiritual constant context, I've come across people talking about the idea in Islam, talking about the outer eye versus the inner eye. Right? So there is some conversation about it. And, we mentioned that I was one of the founders of Canadian Association of Muslims with Disabilities. We started that conversation specifically within the Muslim community to help people reflect on how disability is seen within their spiritual context, to shift those attitudes. Because in Islamic tradition, through our holy book, and the traditions of the Prophet that we follow as our sort of constitutional rights, disability aspects are used in metaphoric contexts. Like the ability not to see, the ability not to hear, the ability not to speak, not to move — all these are used in sort of metaphoric contexts. But not in a physiological context. There's no reference to disability in a physiological context within Islamic tradition, reducing the role of people with disabilities. So, that's also something that gives me that ability to speak truth to power.
Al Etmanski 17:16
That really, for me, juxtaposes the sense that somehow in North America, or in the European world, or out of the European tradition, that we have the most enlightened approach to disability, and what I'm hearing from you is a counter-narrative to that that is not well understood. And it's important that that be articulated. Is there anything that you would refer us to, as listeners, that we could learn more about that?
Rabia Khedr 17:49
This is something that we're actually working on through our network of Muslims with disabilities internationally. We actually did an international conference last year on disability in Islam. And the whole reason was to bring forward research that is in English, and have it shared amongst people from around the world. And we engaged people from maybe 24 different countries, and we will be launching an online journal, on disability in Islam, specifically for that reason. Because we feel that we can use people's faith to help shift attitudes that might be otherwise contextualized within their cultural realities, or experiences. And cultural experiences in many different parts of the world see disability in many different ways, and often negative. Often associated with karma, with bad behavior, with a curse, as a taboo. And in order to bring people out of those pity, embarrassment, misfortune, sort of approaches toward disability, we want to have them reconcile those perspectives with their religious duties, with their religious beliefs. And say, “Hey,” if, for example — and I'm giving you maybe the most direct example — in Islamic tradition there's actually a passage in the Quran and a verse that tells a story. And this verse was revealed as a result of an incident. There was an incident where Prophet Muhammad was sitting with some elders in Mecca, wealthy nobility. You know, there was some governance, some political maneuvering going on. And a blind man approached him and he frowned and looked away. That blind man came with a question and didn't realize that there was some important meeting going on. And the Prophet frowned and looked away. And this verse came down to rebuke the Prophet for his behavior. And that's a very important learning piece. And, and the message around it was, essentially, who says who's more important, right? So, that just speaks volumes to how people with disabilities were recognized. And that same gentleman went on to be the administrator of the city of Medina, in the absence of the prophet, in the future,
Al Etmanski 20:41
I look forward to those resources you've talked about. We'll make sure that the listeners have access to your website associated with your own work, but also all of your other work. Rabia, in my book, The Power of Disability, I have a subtitle that says, “10 lessons for surviving, thriving and changing the world.” And my point there is that there's an untapped source of wisdom on all of those levels. I'd like to turn our attention to this whole question of how to change the world. And I want to get into some very specific things that you're involved with. But before I do, in a general way, what do you see as some of the biggest challenges that we're facing as a society right now, other than COVID itself, but maybe that has been amplified by COVID?
Rabia Khedr 21:37
Well, the the inequities, the discrimination, the disproportionate impact of emergencies and, you know, politics and all that really has come to the forefront. There is an implicit hierarchy of priorities. And we've seen this play out with emergency measures and any responses to supporting people. We saw whose life mattered more. The life of people involved in production, in work, in employment was the most valued, and then came students and seniors. And last came people with disabilities. So, in many, many ways, that just speaks volumes to the price tag associated with the worth of people's abilities and age and all that kind of stuff. There's a price tag that is given consideration, in terms of, “Who do we respond to first?” Who's most important, and who's least important
Al Etmanski 23:02
So Rabia, you are co-chairing a broad-based, grassroots, cross-disability initiative in Canada to escort into being an income supplement for people with disabilities. It is something that has been mentioned in the government's throne speech, but you and a number of other people — and I'm involved as well — are working to make sure that that becomes a reality. How would you describe this initiative to secure a Canadian disability benefit?
Rabia Khedr 23:36
I describe it as spontaneous but intentional, as unique and timely. And there's that word, as inspiring. As we move forward to mobilize, the number of people that have expressed interest, have offered to support, have come together to engage in conversations is tremendous. And the speed of lightning at which we're moving, is also very, very inspiring. There is a recognized need that things have to change, that we have to make the future better. We have to make the future better, and include people with disabilities as we make that future better for everyone. And people with disabilities are going to play a central role in improving the quality of life for people with disabilities and their families. They're going to lead the charge and they're going to bring about significant changes, because we're living history. And we have to shape the future.
Al Etmanski 24:51
There's an expression, “nothing about us without us,” in the disability movement. Although it's a genuine political expression that's been around for hundreds and hundreds of years, it's been used by the disability community in many parts of the world over the last three or four decades. And it strikes me that you know that what you're talking about is a profound manifestation of that. No longer is it good enough for just credentialed people to act on behalf of people with disabilities, or activists who may or may not have a connection to the disability world to be leading the policy agenda. I know from your involvement, you're pretty resolute and pretty disciplined, and pretty blunt about this expression: “nothing about us without us.” And on one level, of course, everybody can agree with it in principle. But, I wonder if you could unpack that just a little bit in terms of what the implications are. Because I find myself, as a longtime disability advocate, and as a parent, having to rethink my role, my place and my position in this. And maybe others who are listening or watching this today may be thinking the same thing. So could you maybe go into that expression a little bit more?
Rabia Khedr 26:07
Well, to me, “nothing about us without us” means that we all have to be involved in the change that we want to see. So if we are working on an issue or seeking an opportunity, and wanting to make a real, necessary solid impact, then we, as people with disabilities, have to be at the decision-making table. We can be supported by allies and friends. Families are a part of that lived experience of disability. So I think, you know, somebody like you, as a lifetime advocate, parent, you have the right to a seat at the table. However, it can't just be all parents. It can't just be one kind of disability. It can't just be all a bunch of academics and policy people. We all have to work hand-in-hand. But the range of disabilities, of lived experience, needs to be reflected in the journey — at the table, making the decisions, leading the work. People with disabilities cannot just be consulted, cannot just serve as advisors, cannot just be called upon to give their knowledge and time freely. They must be compensated for the work that they do. Bureaucracy, programs and services, policy changes cannot just generate opportunities in the economy that benefit able-bodied people on the backs of people with disabilities. We know what's best for us. And that's why it's “nothing about us without us.” And that's why we have to be involved in all aspects of the work that's going to impact our lives.
Al Etmanski 28:05
Rabia, there's another dimension to big impact systems change and that is cultural. And, that word is used in a couple of different ways. One is the culture as in art and music, and the like. And the other is cultural as in cultural background, cultural experiences, traditions associated with country of origin, etc. I'm not doing a very good job of describing that one. But these cultural dimensions of change are important. And you're right in the middle of that on so many different levels. You co chair, the Canadian Muslim COVID-19 Task Force and you're on this federal government advisory committee as well. Can you comment on what I call the cultural dimensions of change? What have you learned about that? So it's not just policy, not just money, but that there are other things we have to pay attention to.
Rabia Khedr 29:09
Well, there's always a dominant culture in our systems and structures that caters to what it views as the norm. The lens that it views the world around it, and the impact of the work that's being done. It's the lens that what is normal is seen. So, that dominant culture is what is deeply seated throughout our socioeconomic political system and structures. And comes out in the form of policies, programs, procedures, goods and services, etc, etc. trickling down to the end users who are vastly diverse. And those vastly diverse individuals come from various backgrounds of lived experience, of culture. Culture is tied to an ethnicity, it's tied to rituals within the family structure, it's tied to class. It intersects in so many different ways. And race also plays a huge role. So, if we truly are to bring about impactful change that is inclusive, then we have to make sure that we are leveraging the richness of diversity that your local Walmart has learned to leverage on holidays and holy days in marketing strategies, right? Where they view it as profitable. The sort of, you know, public sector also needs to recognize that diversity and inclusion goes beyond celebrations, that we have to do work that incorporates an equity and inclusion lens, intertwined with accessibility requirements. And, around this kind of work, a lot of times, we sort of compartmentalize, well, these are the disability issues, or accessibility barriers or whatever. And here are all the equity things going on, given somebody's race, and culture, and religion, and yada, yada, yada. Whereas, these things need to come together. So, coming back to my one-liner, I gave you my religious background. I gave you my linguistic, ethnic background. I gave you my nationality, my gender, my marital status, my work, career, the roles with siblings and stuff like that, and my disability. So it's this whole aspect of me that makes me a whole person, that informs my lived experience. And also impacts how I engage, what I need, how I access what I need, and what barriers I face, and how those layers of barriers, disadvantage me within the dominant culture. So, if I'm not sitting at the table to voice from my perspective, my needs are going to be neglected.
Al Etmanski 32:39
As we're coming toward the end of our time here, but, I wanted to ask you about this. Because it seems to me there's potential tension here between two perspectives. One is the perspective that you've just been talking about, which is that all of these different identities come together. In effect, it's a message about solidarity. It's a message about we're stronger together. It's a message about looking for where we have common agreement and how we can move forward in a more unified manner, on the one hand. And on the other hand, there is this whole question of identity and I know in the disability world, this whole emergence of pride. It's a mixture of pride. It's a mixture of anger. It's a mixture of frustration. Enough's enough, you know. We've got to get these changes happening. It's not good enough to be incremental in our strategy, and in our approach. So there's potential tension, at least between identity, as I've just described it in this broader solidarity. How do you see that resolved? Or do you think it's contradictory?
Rabia Khedr 33:55
I don't think so. I don't think there's a contradiction. I reject all that ableist language of, “we're differently abled,” or we're “physically challenged” and all that kind of stuff. Right? Having a disability is an aspect of my life, right? When I'm giving you that sort of sequence of my identity, I'm kind of just, you know, trying to educate people to look past my disability and realize that I am a whole human being and my disability experience is a definite part of my experience as a human being. And it cannot be ignored. It cannot be dissected. It cannot be segregated. It cannot be compartmentalized, and dealt with only as disability. I cannot be looked at as just the disabled person.
Al Etmanski 34:53
Thank you. Thank you for that explanation. Maybe a final question and I'll just throw it back to you. We've been talking now for 30 plus minutes. Is there anything that you'd like to leave the listener/viewer with, in terms of this discussion or in terms of the work that you're doing, or an insight that you, as one of the wisest people I know, has gained in your life? Over to you. You know, what have I missed and not asked you?
Rabia Khedr 35:33
I mean, we could talk forever on these issues. And there's lots to be said, and there are lots of other people who need to also be heard and have a say, but I think we're at a very critical point in history. We are living in the 21st century, and we need to do things better. And we have a duty and an obligation to do things better. If we don't seize this moment, if we don't recognize the urgency and the opportunity, we're going to look back and regret. So I really want every single person who is tuning in for this conversation to recognize that they do have power, that there is a need for change, and the time has come. The time has come for us to act together, to make that change a reality. And that change benefits everybody. Nothing we champion takes away something from someone else. When we change the conversation, to including racialized people with disabilities, looking at diversity and inclusion in a more broad based way within disability. We're not taking anything away from the majority. We do have, you know, a rising mindset today that thinks that we are going to take power away from the establishment, power away from the historical gatekeepers of power in the systems and structures of this Confederation. That's not the goal. The goal is to share power.
Al Etmanski 37:28
Rabia, thank you, it's been a delight to speak with you this way on the podcast.
Rabia Khedr 37:37
Thank you very much.
Al Etmanski 37:39
So for the listener, we will have access and information on Rabia's website on the website of her many other organizations and a link to this work that she is leading on securing a Canadian disability benefit, which is being characterized as a great example of how to build back better. And, as well, you'll find out how you can book her for your next conference or meeting, and stay in touch. If you want to read more about The Power of Disability or learn more about it, be sure to listen to the other conversations in this podcast series. You can check out my website and you can also check out my latest book, The Power Disability: 10 Lessons for Surviving, Thriving and Changing the World. And with that, I bid you and Rabia a good day. Cheers.
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Alex Abahmed 38:44
This has been part four of The Power of Disability, a special six-part series of the Below the Radar podcast. Check back next Thursday for the fifth installment. This series is curated and hosted by the community organizer, social entrepreneur and author Al Etmanski. Theme music for The Power of Disability is “There Is Nothing Wrong With Me, Epilepsy” by Todd Oseki. The production of this series is supported by SFU's Vancity Office of Community Engagement.
[music, singing: “Disease, disorder, what can it be? There’s no need for sympathy. Disease, disorder, epilepsy. There is nothing wrong with me.”]