issue #143 - the one on Disability Pride Month

Qudsiya on disabilities in present-day America

July 17, 2022

Huge thanks to Hitha for letting me take over the editor’s note again this year as we observe Disability Pride Month in the U.S. to commemorate the passage of the Americans with Disabilities Act in 1990.

I must admit, I’m full of mixed emotions when it comes to disability pride this year. On the one hand, I feel incredibly blessed to host Down to the Struts, the podcast about disability, design, and intersectionality, as it has given me the chance to interview incredible people like Conchita Hernandez Legorreta (support her amazing organization, Metas International, which offers blindness education to Latinx children and their families), Justice Shorter, Lydia X. Z. Brown (If you live in MD, check out Lydia’s campaign for the House of Delegates), Rebekah Taussig, Judy Heumann, and many others who have taught me what it means to live the principles of disability justice and fight for disability rights. Through the podcast, I’ve gotten to be in community with amazing leaders like Azza Altiraifi, Sandy Ho, and Prianka Nair to talk about issues I care about like dismantling our ableist immigration system. And now, I get to share these experiences and conversations through my newsletter, Getting Down To It.

But the truth is, we, disabled people, are the largest minority that anyone can become a part of at any time. According to the CDC, an estimated 61 million American adults have disabilities—a quarter of the population. By 2040, the number of Americans over the age of 65 is projected to double, quadrupling the number of people who will have daily care needs. And this does not even account for all those who will experience disabilities as COVID long-haulers. The truth is, we all live in bodies, and our access needs will evolve over time. So why not design a world that is built for all of us and invest in a care economy that protects the dignity and humanity of care workers and care recipients alike?

This disability pride month, I offer you these resources to immerse yourselves in disability culture to learn about the beauty and magic that is possible when we center access and inclusivity of all bodies:

And now, I leave you, in love and deep gratitude, with these words from queer feminist, activist, and beacon of the disability justice movement, Audre Lord:

“It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.”

What Qudsiya Read This Week

  • His Dark Materials by Philip Pullman - I’m currently obsessed with this epic fantasy trilogy. I’m in the midst of the second book, The Subtle Knife, but start with The Golden Compass (titled Northern Lights elsewhere in the world), and I’ll meet you at The Amber Spy Glass. These stories are page-turners, complete with armored bears, witches, and deep conversations about physics and theology. Philip Pullman wrote these as a reaction to the Chronicles of Narnia (a beloved childhood favorite of mine, still), challenging organized Christian church structures and concepts that CS Lewis pays homage to in his series. This is a great summer reading project, and if you’ve got a pre-teen or two in your life, you can read it right alongside them, because these stories don’t lose their luster as you grow up.

What Everyone Else Read This Week

Hitha

  • Breath of Fire by Amanda Bouchet - the second book in The Kingmaker Chronicles is even better than the first and Cat and Griffin are the couple I’m ‘shipping as much as I do Feyre and Rhys, Diana and Mathieu, and Kareena and Prem. I still stand by my original asssessment that this series is the love child of ACOTAR and Circe and its own incredible series, and book #2 just validated that even more. I will be sad when I finish this series.

  • Below Zero by Ali Hazelwood - the final novella in Ali Hazelwood’s STEMinist trilogy, this one might be my favorite since it centers on a NASA couple (and you know how much I love space). If you want something light and short to read, I can’t recommend this series more highly - they’re sweet and bring the steam after a slow burn.

  • Summer Breakdown by Colleen Temple- Full disclosure, Colleen is a friend, so I've been following along on her book-writing journey, which has been very exciting! I loved Summer Breakdown - as it's a true, honest look at motherhood - and what happens as a mother when everything else around you starts to crumble. I highly recommend Summer Breakdown for your next beach read!

Top #5SmartReads Of The Week

The rest of the week’s reads + last week’s (and conversations!) are below:

Your Questions on Disabilities in America, Answered

What advocacy work can we do as we call our reps to be more intersectional in those calls?The best thing you can do is think about how disabled people (particularly disabled people of color) might be affected by whatever policy or legislation you are calling your representative about. Check out Skin, Tooth, and Bone, the disability justice primer created by Sins Invalid for a great overview of how intersectional thinking can advance liberation for all, especially disabled people. 

What are 1-3 things each of us could do to make our homes/ businesses/ communities more accessible to people with physical/mental/invisible disabilities?Here’s my attempt to break this down into three simple steps:

  • Ask: If you encounter someone in your community who has a disability, first ask if they want assistance, and be prepared to accept that they might say “no.” Within the concept of asking is the concept of offering—if you’re hosting an event, for example, it always feels welcoming when the host asks about people’s access needs in advance, and offers information about the accessibility features of the place where the event is being held (e.g., ramps, ASL interpreters, extra lighting, etc.). Here’s a great resource on accessible events.

  • Listen: Really take into account what a disabled person is telling you about their needs—just like you are the expert of your needs, they are the expert of theirs.

  • Advocate: If you’re participating in an activity, and you’re not sure if it’s accessible, ask questions—Is there a ramp? Will there be sign language interpreters or captioning? Will you provide guides/assistants for blind participants? A great form of allyship is to help take the burden off of disabled people to constantly advocate for access. When we have more voices demanding access, we’re more likely to affect true transformation.

Does a child diagnosed with autism qualify for SSI so I as a parent can be compensated for missed work?I unfortunately am unable to provide specific advice on individual situations, but check out this resource from the Social Security Administration on benefits options for children.

How best to be an ally, especially for those with less/not visible disabilities?Ask, listen, and advocate for access.

How does disability insurance work? If anyone can become disabled should we invest in it?I’m not an expert on disability insurance, unfortunately, so I offer these thoughts with that caveat. But some of the challenges I see include the fact that disability insurance is a benefit that is tied to employment, it does not provide full salary level compensation, and it is often only a temporary stop-gap that would not be sustainable for someone with prolonged or long-term illness/disability. What we really need is sustained investment in our care economy that will provide for everyone’s needs, regardless of whether or not they are ever able to work, coupled with fair compensation and treatment of all care workers—that includes family members who take on that role. For deep insight into how care works in the U.S., check out Sara Luterman’s reporting for The 19th.

Thanks again to Hitha for creating this shared space, and for bringing conversations about disability into it. And huge thanks to each and every one of you for bringing your attention and awareness to my reflections on disability pride. I hope you consider subscribing to Down to the Struts; joining us on Facebook (here’s a Facebook live conversation I had this week with Sara Minkara, the Special Advisor for International Disability Rights and the U.S. State Department.); following us on Twitter and Instagram; and subscribing to the Getting Down To It newsletter. If you find our content meaningful, you can also by us a coffee, and of course, share with your friends and loved ones.

I also want to give a massive shout-out to my phenomenal audio producer, Ilana Nevins, and my social media manager, Avery Anapol. Without these two exceptional and talented people, this work would not be possible.

Be well, and always remember to honor your body and all those around you, in every shape, size, form, and ability. When we do this, we are better able to live in community, kindness, and joy with one another in a world that is accessible and inclusive for all.

In solidarity,Qudsiya

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