Team Titin Celebrates Disability Pride Month

Guest post by Gg Woodward (Team Titin Volunteer)

July is Disability Pride Month, and Team Titin is excited to share some disability pride with the titinopathy community! Disability Pride Month is celebrated in July to commemorate the passing of the Americans with Disabilities Act (ADA) in July of 1990, and was first celebrated on its 25th anniversary in 2015.

Disability Pride Month exists to celebrate the physical, intellectual, and neurological differences inherent in human beings and to bring the disabled community together to value those differences. Disability Pride means remembering how far we have come and what it took to get here, honoring the activists who fought to improve disability rights and improve the lives of disabled people, but it also means acknowledging how far we have left to go and working together to make progress.

Disability Pride creates a space for disabled people to feel worthy, respected, and loved within our own community. The unique struggles of disabled people deserve to be seen and heard, but struggle is not all we are, and Disability Pride celebrates all the beautiful parts of disability, especially highlighting community and resistance.

Disability Pride’s Relevance to Team Titin’s Mission

Team Titin aims to unite members of the titin community to improve the lives of people with TTN-related health conditions (titinopathy). Disability Pride Month is all about unity, community, and connection, and it is an opportunity to continue to build our connections and create an environment of support and empathy.

This can be especially important for members of the community with invisible disabilities, which are often ignored, dismissed, or misunderstood. For people whose disabilities aren’t always obvious, such as those with heart-only titin-related conditions, it can be difficult for people around them to understand they live with a disability or to find community. Disability Pride Month offers a unique opportunity to reach out to these individuals and remind them that they are valid and valued members of the community! Disability comes in all shapes and forms, and it isn’t always something you can see.

Disabled people come together for Disability Pride Month to advocate for disability rights as a united front, and Team Titin encourages members of the titin community to reach out to one another and to other disabled people with love, care, and pride this July! As always, we are stronger when united, and we can help counteract the ableism and health struggles that people with titinopathy face together.

A Personal Reflection on Disability Pride Month

As someone with titinopathy myself, I often struggle to feel prideful about my disability, especially given the physical and social realities it presents me with. But Disability Pride Month is an opportunity to not only try to offer myself love and respect, but to honor the efforts of the disabled people who came before me and who live alongside me. For disabled people, life is often a team effort, and Disability Pride Month is an opportunity to get our teams together, form community, and offer the care to each other that we don’t always receive from the rest of the world.

For me, this month is a chance to connect with people who have similar life experiences and to remember that I am a part of an expansive, supportive, wonderful community of people who care deeply for one another. As long as we have each other, we are never in this alone, no matter how difficult things might seem. At a time when life is tumultuous and many people with titinopathy are struggling more than ever, this is an opportunity to remember that disability can be beautiful, and that no matter what, we have each other.

Ways to Connect with Team Titin and Share Titinopathy Pride:

Join our closed, online discussion group on Facebook here: www.facebook.com/groups/teamtitin
Check out the Reddit community here www.reddit.com/r/titinopathy/
Connect in person to Team Titin at the upcoming MDA Engage conferences in Hershey, Pennsylvania July 18 or Chicago/Lombard, Illinois Sept 26. Learn more and find the links to register here.
Print or download a Titinopathy Awareness Card and share it with friends, family, doctors, teachers, etc. to show your pride!

A Pride Playlist!

Looking for some musical connection? Well here’s a Disability Pride Month playlist! 22 songs covering the broad span of what disability can feel like. From songs explicitly about disability to ones that just…feel right, this playlist covers righteous anger, hope and confidence, joy, grief, and everything in between, because Disability Pride is about much more than just pride.

Note: This playlist has been curated with adults in mind. While it contains no extreme explicit material, some songs may have heavier themes or tones. Listener discretion is advised.

Listen to the playlist on Spotify here or click below:

We’ve also included the song titles and artists so you can find the playlist in the way that works best for you:

I’m Not Remarkable – Kitty & The Class
This Is Why We Can’t Have Nice Things – Taylor Swift
brutal – Olivia Rodrigo
This Is Me – The Greatest Showman
Wonder – Natalie Merchant
Blackbird – Sarah McLachlan (or The Beatles)
I, Carrion (Icarian) – Hozier
Gracias A La Vida – Mercedes Sosa
SPACES – James Ian
We Are The Same – Mark Goffeney
Pain, Sweet, Pain – Zach Bryan
You’re Gonna Go Far – Noah Kahan
I Lived – OneRepublic
Eyes of the World – The Grateful Dead
Francesca – Hozier
Let Down – Radiohead
Cure for Me – AURORA
To Be Hunted – Childish Gambino
Take Stairs in Case of Fire – Wheelchair Sports Camp
I Will Survive – Gloria Gaynor
Strong Enough – Cher
The Story – Brandi Carlile

Curious about the reasoning for these songs being included? Find it here https://www.reddit.com/r/titinopathy/ on the titinopathy subreddit! This post gives reasoning for every song on this list.

More Resources

Read more about Disability Pride and its history:

Read more about celebrating Disability Pride: