Being Black & Disabled: A Parent's Perspective

Joeita Gupta:
I am Joeita Gupta and this is The Pulse. Navigating through disability while being black can be a disheartening challenge. Being born black in Canada means you are never the norm. Likewise, disabled bodies are never the norm. Put disability and blackness together and you get experiences of ugly exclusion and neglect. Too often, disability rights movements don't consider blackness and struggles for black liberation don't factor in disability, but the pathway to true disability access and liberation is rooted in anti-racism work. From healthcare to education, policing to incarceration, disabled, black lives matter. Today we discuss being black and disabled. It's time to put your finger on the pulse.

Joeita Gupta:
Hello and welcome to The Pulse on AMI Audio. I'm Joeita Gupta and I'm joining you again from the Accessible Media Studios in Toronto. I'm in Studio five, and you've got some multicoloured squares on a black background, and I'm wearing a sort of a brownish sweater with a zip down the front so it's really warm and cozy. And I'm really delighted today that we're talking about some Canadian perspectives on being black and disabled. I find that when we have conversations, especially in the context of Black History Month, that many of the voices we hear discussing the intersection of being black and disabled tend to be from the states. And I've [inaudible 00:01:48] an effort this year to try and feature Canadian voices, Canadian stories, and Canadian perspectives. I am going to try to bring you some of those voices, researchers, activists, artists in the next couple of weeks because I don't just believe that we should be talking about the intersection of blackness and disability over Black History Month.

Joeita Gupta:
It is such a cornerstone issue when it comes to disability justice that I feel, in fact, we should be talking about it every day. If you believe that this show brings useful content, I hope you remember to subscribe. We had a number of people subscribe recently on YouTube, and I want to say thank you and welcome you to the Pulse family. And of course, please tell your friends about it. Let's move on though because we have an amazing guest today. Tina Opaleke is the founder of Prosthetics for Foreign Donations. She's also a mother, an activist, an artist, and an entrepreneur. Tina, hello and welcome to The Pulse. Thank you so much for joining us today.

Tina Opaleke:
Thank you for having me.

Joeita Gupta:
I am sure that there were many moments when it was difficult to see the intersection of blackness and disability and how challenging that can be, but was there one single moment which crystallized how much of a challenge it really was going to be?

Tina Opaleke:
As you mentioned, there are intersections of blackness and disability, and if I was going to crystallize a moment, it would be trying to get my son his first prosthetic. I am somebody with invisible disabilities as I was born with club feet, so my disabilities aren't recognized. And he was trying to walk and kept injuring himself because he did not have a prosthetic, and he has a femoral deficiency, which makes his right leg 70% shorter than the left. And I was advocating for him as a mom, as a disability advocate, and they told me, "No, he cannot get a prosthetic. He's too young."

Tina Opaleke:
And they threatened to call the police on me because I am somebody, I stand firm in my beliefs and I'm not easily swayed. But that would be just one situation whereas Canadians, it's our right to get prosthetics and just the threat of the police is something that is used against people of colour in general to scare us. And I was like, "Yeah, call them. Absolutely." So that's just one instance and such a disheartening experience because it was our first time at a prosthetic studio ever, and that was memorable in the worst ways.

Joeita Gupta:
I just hope your son doesn't remember it, but it must have been very traumatizing for you as a mom who was just trying to do the right thing by her son, was it one of those moments where you really felt like your knowledge about what your son needed was not treated with as much respect as the authority of, let's say a white male physician who perhaps thought they knew better than you did what your son needed.

Tina Opaleke:
And well, that's the lack of humanity and the lack of empathy that exists. It's also when you oppose somebody of authority. I myself am an academic and I will walk in a pair of Jordans and a sweatsuit, and I don't need to wear my Louis Vuitton just to be acknowledged as somebody of calibre.

Tina Opaleke:
But for my son, I actually made it fun. He wouldn't have known anything. We were doing headstands in the room and I had brought snacks, so I just made it a fun experience but still advocated for him. And when the prosthetic was made, they made a white leg, which I thought they were showing me a mock leg that, I didn't know it was for my son. So I was like, "No, this is so cool." So I was like, "Hopefully when you get my son's leg"... And he was like, "No, this is for your son." I said, "But you do see that we're black, so I wouldn't put a white prosthetic on him." And of course he got beet red apologized, and even that, he had to wait another two weeks to get a colour specific prosthetic. And what I realized is he did not see my colour. He didn't really see us. And yeah.

Joeita Gupta:
But isn't that what people say that you shouldn't see race, but it almost seems like it was harmful to you and especially to your son in this instance when a person designing the prosthetic chose not to see race because it just put your son in this weird position.

Tina Opaleke:
Yeah. And I'll always say, people who say don't see colour are usually people who have no colour, who typically say that. But I am very proud and intrinsically linked to my race, to my melanin, and it's a beautiful thing, so it's not seen as a bad thing. So I do see colour, I do see culture. I do see our differences and how our differences are actually quite beautiful. Those are the idiosyncrasies of each of our cultures that we get to access. And I always say, "No people of colour understand that statement, don't see colour." It's like, no, this is very important to me and my brown skin is very important to me and I want it to be seen, acknowledged, celebrated and appreciated.

Joeita Gupta:
Yeah. I feel you, being brown and beautiful.

Tina Opaleke:
Yes.

Joeita Gupta:
As a mom having conversations, it's one thing to have conversations on a podcast like this with a fellow adult who you hope will understand the issues. It's another thing to navigate these labyrinthine conversations with a young child. As your son grew older, how did you have conversations with him about disability, blackness and the intersection of the two?

Tina Opaleke:
A lot of things are in life experience. So for me, when situations come up, we have conversations about them in that moment so we can unpack them, whatever may have happened where maybe we've asked for a seat. We chose to take the bus, we parked our vehicle just because we were going downtown and his leg was tired. He is a right leg below knee amputee, and we asked for a seat and the people kind of shrugged us off, "Why should I give you my seat?"

Tina Opaleke:
And they were seated in the disability seating, the accessible seating on the bus and so we had to let him know "You're seated in his seating and you need to get up." So also just to let him know that that person sometimes doesn't value us as people, so they don't also see you. So you do have to stand your ground, but with respect and love, and we talk about that after that. So those little kinds of micro-aggressive moments don't seem that significant to others. But when they happen in multiple occasions, sometimes anywhere from five to 25 times a day, depending on how many people you're around, we have to unpack these microaggressions that sometimes become very heavy.

Joeita Gupta:
Because there's a trend you start to see. And it's not just a trend in the life of one person, it's a trend that many people who are black and disabled might face. How effectively has the disability rights movement, would you say, grappled with issues around race and blackness in particular?

Tina Opaleke:
There are a lot of amazing activists, Dr. Syrus Marcus Ware, Sarah Jama, who's doing great things in Ontario that there are the more of us and the representation of course matters. And in some ways, accessibility is so diverse, whether it's a physical disability, developmental, there's just so many intersections of disability. So race does matter when it comes to disability, it's not always at the forefront, of course, because it's just more about the accessibility in general for all of us. And then on top of that, then we bring in the intersections, whether that be gender-based or there's so many different intersections. But yeah.

Joeita Gupta:
That's a really interesting point. But if you don't mind, push back a little bit and say, historically when we've thought about disability organizing, it's been organizing for white men in wheelchairs, it's been a sort of one of the critiques of disability organizing. Don't you feel that when we theorize from a place of where the starting point for our theorizing on disability justice is centring blackness, is centring, indigeneity is centring the voices of women, that we do disability justice in a more inclusive way, and we sort of expand the tent to include more people?

Tina Opaleke:
Yeah, I absolutely agree with that. And yes, a lot of these spaces, a lot of even access to these spaces, you hear about events after the fact and you're like, "How did I not know about this?" It would've been great for this to be extended to all communities, not just specific privileged communities that are constantly getting accolades and being invited and welcomed and into these kind of elite spaces. But yes, it is the women, it is the people of culture, the people of experience, the people of adversity as well and disadvantage creates this resourcefulness, creates this new way of thinking, and that is the voice that is needed to be heard.

Tina Opaleke:
But I also believe in, how would I say? Sometimes I'm like, I don't want to be in your space. I want to create a space that's inclusive and that's the space I actually want to be in. So I love the organizers that we are creating these spaces and we are creating these opportunities for black and brown and cultured bodies to have voices and have this platform to exist as opposed to sometimes breaking into these other spaces. To me, I'm just like, "We need to create alternative spaces that cater to all of us." So yeah, I do think there is this wave of black advocacy, POC advocacy and yeah, I think it's beautiful and it's coming and it is just a beautiful wave. Yes.

Joeita Gupta:
What about the government and the way in which society seems to put people in boxes or create silos? February is Black History Month, then December 3rd is International Day of Persons with Disabilities, but we never really see in public discourse those two things brought together in any significant way. How would you address that gap?

Tina Opaleke:
Originally I'm from the Prairies as well, so I don't always speak from on an Ontario perspective. Most of my time in Ontario has been spent here during covid. So I had limited access to kind of evaluate, observe. But from a Manitoba perspective and a Prairie perspective, we created a Black History Month committee that just started to access spaces like the Human Rights Museum and creating a partnership with them. So the government can also support these kind of organized spaces. So having dancers from different communities coming and showcasing the beauty of the drums and the music, but also having history sessions, having science and mathematics and just all these different events throughout the month, but they are put on by black organizers, supporting the Black community, supporting black businesses, and so they all come together as one. So that's what I'm more used to in the Prairies of having that aspect.

Tina Opaleke:
And I know there are pockets of this in Ontario, to me, it's just a matter of having black and brown people in the decision-making positions. And that to me is always going to be what it is. A lot of decisions are made, and if you look around the room, are there any black or brown bodies in that room because they would come with a black or brown perspective. And a lot of times that perspective is left out because there are there any disabled bodies in this room within intersections of gender, race, culture, disadvantage? Where are these people in the room? And until we get those positions, in my opinion, that's the only way of changing it on a government level. They're going to continue to exclude us. We know this historically. They do not value our voice. So if my voice isn't valued, I'm just going to create the space where you are going to acknowledge my voice.

Joeita Gupta:
One of the ways in which you've created a space is through your not-for-profit. You're the co-founder of Prosthetics for Foreign Donation, and I say co-founder because your son is the other co-founder. Tell me about how all of that got started.

Tina Opaleke:
Okay, so again, my son was born in 2008 and we recognized the femoral deficiency, went to the geneticist, all these appointments and came to find out, yes, he's born with what's called PFFD, which is proximal focal femoral deficiency, which we named the charity after the same acronym. And my son was, we got an appointment where he was going to have major surgery, so he is going to have a reconstructive hip surgery at the age of four, which is major as a mom. I was like, "Oh my goodness, we are going on vacation." So I was like, "He gets to play for three weeks in the sand, in the sun on the beach." And that's what we did. And we went to the market to get some fruit one day, and my son kind of just walked off. I saw him in my eyesight just to the right, and there was a man on the skateboard.

Tina Opaleke:
I wear glasses, so I couldn't see he was an amputee at the time, but my son was just talking to him and then they called me over. So I go over and my son had taken off his prosthetic and he gave it to the man and he said, "Mom, this man has no legs. And so I gave him my leg." And we just started crying. It was a beautiful moment. And in that it was like this where a light bulb happens and it's a defining moment in your life. And I realized he as an amputee gave his prosthetics. Maybe there are other amputees in Canada who would give their prosthetics to amputees without them, and we can get these used prosthetics and repurpose them to prosthetic clinics in Africa and the Caribbean all over the world and be a part of this kind of global community and have our global footprint in that aspect. And that is really how PFFD started is just my son having a really beautiful heart and giving away his own prosthetic on vacation and yeah.

Joeita Gupta:
[inaudible 00:17:40]-

Tina Opaleke:
And 12 years later, this is where we are.

Joeita Gupta:
Your son, it sounds like he's an incredible person, which makes sense because he has an incredible mom.

Tina Opaleke:
Ah thank you.

Joeita Gupta:
If someone wanted to donate a used prosthetic, because I know you can't reuse prosthetics here in Canada, that's not allowed.

Tina Opaleke:
No.

Joeita Gupta:
But if someone wanted to go through PFFD and donate a prosthetic, how would they go about doing that?

Tina Opaleke:
Yeah, so you could always contact us through our email, which is prostheticsffd@gmail.com, or you can go through the website, which is www.pffdinc.com. And on any of our social medias @pffdinc, you can always drop us a dm. We're always monitoring all these locations and we are hoping in the future, what our true purpose with PFFD is to start a repurposing program where prosthetic clinics, we have a pickup service the same way the garbage man or the recycling is picked up on a schedule. We would love every prosthetic clinic to stop throwing away reusable prosthetics. We can really bring down the waste that goes into the landfill to keep Canada beautiful for the future generations, our children's children. So we would love to start this so it goes across the entire country. And I believe a repurposing program should be in effect, and PFFD wants to is in the manifesting stages of this.

Joeita Gupta:
I think it's an excellent idea. I also know that amongst other things, you are a spoken word artist and you have been kind enough to share a bit of your work with us. So why don't you go ahead and set it up for us and do a bit of spoken word for us.

Tina Opaleke:
Thank you. Yes. So when I perform, my name is QueenTite Opaleke and the poem I'm going to share with you guys is called Real. And it really just has to do with unpacking really being real with yourself and what your purpose is. So this is Real and I hope you enjoy it.

Tina Opaleke:
Teach the youths to stand up tall, however big or small, fighting for human rights and justice for all, whether you are brown, black, gay, queer, hybrids and shapes and forms from near and far. I was born a natural cis star. Beaming, gleaming, kind of like afro sheening, back tattooed with tribal meanings, just real. And as I stare into the depths of my mind, as inspiring spirits, they infest me with rhyme. I know that at this very moment in time, all this power is mine. Divine, spontaneous influence, all in full shine.

Tina Opaleke:
I know it's as easy as being heard, but do you understand the meaning of my words? From the look of my eyes to the body language that I speak, my ups and my downs, my weakness and my freak? I'm not a simple woman, it is rather complicated. Some of them they love me and to others, I am hated. Memories they keep getting faded and faded and faded. You keep those you want to keep. Dreaming is sweet, but when you're dreaming, you're really not asleep.

Tina Opaleke:
See, in my dream, I was running. When I woke, I was tired. In my dream, I was writing when I woke, I was inspired. Inspired to rise to the highest of heights, spreading my wings, allowing my dreams to take flight, leaping faithfully into the depth of my own fright. Ooh, I feel cooler than the darkest of night. And in this space, I am stealth with an abundance of soulful wealth. Here I rise and to I, this climb is no surprise. It was predestined in my book of life. And in this book, I teach the youths to stand up tall, however big or small, fighting for human rights against the injustice system for all. So whether you are brown, black, gay, queer, hybrids, and shapes and forms from near and far, we were all born natural brothers and sisters, beaming, gleaming. Kind of like how my mom stays afro sheening. Kind of like how my back's tattooed with tribal meanings. Just real. Yeah, just real. Thank you.

Joeita Gupta:
Wow, that was just amazing. I cannot believe that. That was just, wow. I have no words. It's so cool. I'm so sad we have to go because I could have had you do another one and another one.

Tina Opaleke:
Thank you for having me. This was a beautiful conversation, such an important conversation. And especially with Black History Month. Yes, I do want to see so many events that include Blackness and Disabilities incorporated. And a part of that is PFFDS to exist so that it can be that.

Joeita Gupta:
Absolutely. Hey, Tina, thank you very much for-

Tina Opaleke:
Thank you.

Joeita Gupta:
...being on the program today.

Tina Opaleke:
Thank you.

Joeita Gupta:
Tina Opaleke is the co-founder of PFFD, Prosthetics for Foreign Donations. As you heard an absolutely amazing spoken word, artist, academic, entrepreneur, and mom. And you can of course go and check out the PPFD website and other and keep up with some of their work. And if you have a prosthetic you want to donate, you can find them online and make that donation. It's been great having you here on the program. Thank you so much for joining us today.

Tina Opaleke:
Thank you.

Joeita Gupta:
That is about as much time as we have for the show. And before I go, I wanted to let you know that you are free to subscribe to this channel. You can find us on YouTube, on any of your favourite podcast platforms as well. And make sure you subscribe, you can get more content from us. We put out new videos every week. In addition to that, we want to get your feedback.

Joeita Gupta:
You can write to us at feedback@ami.ca. You can find us on Twitter @amiaudio. Use the hashtag pulseami. If you want to find me on Twitter, you can find me at Joeita Gupta. And if you feel like giving us a call, you can give us a ring at 1-866-509-4545. That's 1-866-509-4545. And don't forget to leave us permission to play the audio on the program.

Joeita Gupta:
As I said, we're going to wrap it up for today, but I'm going to try over the next couple of weeks to bring in other voices and perspectives from the community in Canada, comprising black and disabled voices. And of course, I have a couple of great suggestions over the course of this show, but others as well. And so I hope you'll be tuning in for more content as we explore what it means to be black and disabled here in Canada. On behalf of the team, I've been your host, Joeita Gupta. Thanks for listening. The parts this week was produced by Matthew McGurk, who is our videographer, Mark Aflalo, who's our technical producer, Ryan Delehanty, who is our podcast coordinator. And Andy Frank is the manager for AMI-audio. And I've been your host, Joeita Gupta. Thank you.