Blindness Advocates on Why There Should Be Audio Description Oscars

Jenelle Riley
·8-min read

Paul Castle and Jaimee Kadish share a number of things in common, including a sharp sense of humor and a resiliency that inspires. Both are legally blind due to a rare disease called retinitis pigmentosa (RP) that causes loss of vision over time — Castle was diagnosed at 16, Kadish at 21. And both have brought awareness to the condition and provided valuable representation in different ways.

Castle is a writer and illustrator whose work include the children’s books “The Pengrooms,” about a pair of same-sex penguins. But he is also one half of the social media duo known as Matthew & Paul. The two have gone viral for the pranks Matthew plays on his blind husband — rearranging the furniture so Paul thinks he’s in the wrong apartment, swapping himself out with a mannequin and waiting to see how long until his husband notices. (The videos are always hilarious and usually end with Castle screaming “Matthew!” good-naturedly.) Castle has also raised awareness for the blind simply by speaking frankly about his life, such as having his guide dog Mr. Maple turned away at a restaurant.

Kadish created In-Sight Outreach, a non-profit organization that provides services and information to children experiencing vision lost or blindness. A chance encounter at a retreat led her to meet a producer on “Blink,” the NatGeo documentary about a family who learns three of their four children have RP and will eventually lose their sight. The family, led by their mother Edith Lemay and father Sébastien Pelletier, decide to travel the world for a year, experiencing all the great sights of the world while they can. Directed by “Navalny” Oscar winner Daniel Roher and Edmund Stenson, the film brought Kadish on board as a consultant and to help with the audio descriptions (AD.)

Upon learning Kadish is a fan of Matthew & Paul, Variety got the two together virtually to discuss how they came to their advocacy naturally and the stories they want to see told.

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You’ve both become advocates for RP in the media, but it seemed to happen organically just by sharing your lives. How did you come to be in the spotlight or working in media?

Jaimee Kadish: I came to work on “Blink” because I work at a retreat center in Mexico and it’s really off the map — no roads, in the middle of nowhere — and one of the producers was on retreat here. She got me involved in the project and it all unfolded from there; she brought me on as a consultant and that led to doing the audio descriptions.

Paul, you said your videos originally had nothing to do with RP?

Paul Castle: Matthew and I didn’t start out really addressing it at all. In the beginning, we were just doing lip syncs and silly dances during the pandemic. Then we started a podcast where my blindness was talked about, but it wasn’t front and center. It was shortly after getting Mr. Maple we talked about it more. And about two years ago, we kind of doubled down on talking about it. And it exploded.

Kadish: It’s been such an amazing, beautiful thing to watch how you and Matthew navigate RP in your relationship. It was scary for me to integrate this into my identity and for you both to show how this can be playful and fun and not a negative burden has been so alchemizing. To realize the person who loves me would not have to tiptoe around or be fragile with or avoid talking about. I’m just so grateful for this representation that we can be joyful, and it doesn’t have to be a heavy, hard thing all the time.

Castle: That is so kind. I appreciate it so much. It’s so meaningful to know that by sharing a bit of our lives we could have that effect on people. And to connect with others is so powerful. I was diagnosed at 16 and didn’t meet another person with RP until I was 19. I thought I’d been handling it so well and I went into a support meeting and when it was my turn to talk, I burst out crying for the first time in three years. It was so healing to be with people who truly understood.

Kadish: I was the same — I was diagnosed at 21 and at the beginning couldn’t talk about it without being hysterical because I wasn’t ready to shift my mindset into what RP could teach me or bring me. I was in the victimization and grief of what I was losing until a doctor told me, “Look, people are going to take it the way you present it.” He really invited me into this internal journey of recognizing this is a part of my body and my story. And it brought me here; because of it, I got to work on “Blink” and help tell a story that’s not just about representing the blind community but this family’s unique moment and experience.

Paul, we’ve watched Matthew play so many pranks on you, is there anything that’s off limits?

Castle: Well we just posted something today where he was in cahoots with a preschool teacher who sent back my book with a list of complaints. But the complaints were things like they “liked it too much” and the book itself had teeth marks because the kids didn’t want to part with it and pages ripped out because they wanted to take it home with them.

It was very sweet but the way he set it up had me so upset. For the first time, I finally said, “You know what? Boundaries! No more pranks about art or creations, OK?”

Kadish: Artists are sensitive! I get it!

There’s been many different portrayals of the visually impaired in entertainment and media, and I’m sure some are better than others. Have you ever been downright insulted?

Castle:  Well, I’m, I’m not easily insulted.

Kadish: (Laughing) Obviously!

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Castle: So, when it comes to advocacy for my community, sometimes I might not be the best person to ask. I think I just want to see the best in everybody or believe that someone’s intention isn’t malicious. My biggest gripe with portrayals in the media — and I think we can agree on this — is that we were raised to believe that blind meant no vision. That’s how it was always portrayed. So, people hear “blind”and they think that means zero vision. And that there’s no spectrum, no nuance. And that’s not accurate.

Kadish: I feel similarly. And as I’ve started speaking more publicly about my experience, I’ve had some clumsy moments where I felt I didn’t speak accurately or use the right language, so I also think most people want to come to conversations like this with compassion and love and grace. Because it’s not a conversation that has been had from many different voices and perspectives — and sometimes not from voices within the actual community. So, I often wonder when I see shows that portray characters with blindness — did they have someone consulting them? Do they check in with people who have experienced that for authenticity of storytelling? Because a lot of times I don’t think the storytelling is coming from us.

To that end, Jaimee, you mentioned you did the audio descriptions for “Blink” and the filmmakers have said it made a big difference.

Castle: It was exceptional! The language they used was so vivid and descriptive and as a person with very little vision, of course, I rely on that. To be honest, I’m usually pretty impressed with AD; it’s a real art form. There’s an episode in Season One of “Only Murders in the Building,” and I didn’t even realize it has no dialogue. The AD was fantastic, and she just didn’t stop, filling in every detail. It’s done so well and it’s so suspenseful. They didn’t miss a detail.

Kadish: I really feel like AD is an art and would love to have more conversations around different forms of AD and thinking about it at the start of a project, not just something you do at the end as an afterthought. I’ve heard stories about people are told the last month of production they need to provide AD, and they don’t have the time or resources to really focus on it. You can tell when much effort hasn’t been put into it. And AD has the potential to make everything so much richer — even for sighted people — because it can add to the process.

I actually did a PSA with the director of “Blink” for NatGeo internally where we talked about this as an art form and how there should be an award at the Oscars and Emmys for audio description. I feel like that would shift the creative value in that space.

Castle: It should be a category! The thought that goes into it is incredible. And I think if we can bring more attention to it, things will only get better and better.

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