I wrestled with every word I wrote here. I finally figured out my thoughts just under the wire as Disability Pride Month ends. It's a reminder that disability pride is a process.
I’m glad you labored so much over this because it’s my favorite disability pride piece, especially the part I restacked. You spoke for me as well. Thank you ❤️
Thank you Emily - I’m a Mom supporting my daughter who has Down syndrome, and I have always struggled with her needing to be out loud and proud or just making sure she can live her life, like anyone else, in a typical neighborhood, with a job and friends and church and family. I tend to land on the approach that her just living her life like everyone else is her best advocacy. But we cannot ignore the new threats to her life, your lives, the country as a whole. And what’s the point of reversing this? It doesn’t make economic sense, let alone the loss to our communities. State by state we need to be vigilant to any reversal of community living policy and funding. 👍🏻
Thank you Emily. I was diagnosed as a teenager. It took me about a decade to become proud. My diagnostic label is so heavily stigmatised. Now at 52 years I am a proud Mad, Queer Woman and exhausted. Your article resonates on so many levels. Pride is important because it subverts notions of disabled lives as shameful, tragic, and pitiful. On the flip side, that subversive work takes spoons when required for a particular moment in the calendar - a calendar which is centred on able-bodied time in the neoliberal capitalist soup. If we do this to what Alison Kafer terms 'criptime' we could insist that our pride is fluid, flexible, and contingent on the moment. Perhaps pride month should centre more on the conditions which enable us to be proud, rather than on individual efforts to muster such an emotive state on demand.
Yep yep yep! Everyone tells me how good it is to hear my voice and learn from me and sometimes I’m just tired. Charming and fun to read, but tired. And perform far less than you! Oof.
Thank you for this. I too get tired of feeling like I have to perform. My disability is only a part of who I am and pride for me was being able to go out to Walmart, shop and just be and buy a new pair of jeans or a roll in the park. I take "pride" in being an American and being a part of a family who has deep tires and a long history of protecting democracy and a strong faith in community, multiple religions and faiths, and the Constitution and hard work-the right to work, the right to vote. Every male in our family has fought in an aAmerican war since 1812 and before, Great Grandma was DAR, she fought for woman's rights to vote, my other Grandma was born in Colorado and had a Dawes number- so I take pride in inheriting their pride and determination and how to blend it with disability democracy as well. Thank you for all you do!
Right there with you. And I can imagine that, since you were so publicly on the national advocacy stage at such a young age, this feeling has been lifelong. Truly grateful for you!
There are so many aspects of the difficulty in writing about disability pride while being under intense scrutiny and discrimination that deeply resonates, especially this year. And, I’ve had to reflect on the data that says, people are happier when they turn their attention to gratitude and acts of kindness. Because, nothing else outside of this will protect my peace. The act of turning our attention to gratitude is rather similar to that of demonstrating resilience. Pushing through barriers and challenges while paying attention to our resources, strengths, and needs. Finding peace amidst the chaos.
This is SUCH a necessary reminder, Lisa. Gratitude and kindness get us through...even when they feel so far out of reach. I appreciate you reading this.
I truly believe disability advocacy is about making sure everyone has an equal opportunity to participate, contribute, and belong. Accessibility isn’t about asking for special treatment—it’s about removing barriers so everyone has a fair chance. I’d love to hear your thoughts, too. What does disability advocacy mean to you? 💙♿
Something tells me this all boils down to Trump having to spend extra money or install something that conflicted with his gawdy baroque taste in a building project as a reasonable public accommodation. The offshore windmills he thought ruined the view from one of his golf clubs have made him intent to stamp out all wind energy projects.
Anyone who resists making the world more accessible pokes a finger in the eye of fate. Illness, accident, or simple aging can make any one of us dependent on accessible public spaces to continue living independent, productive lives. There is no bright line between able and disabled. Being human means having a unique collection of abilities and differing needs for assistance and accommodation.
Emily, thank you for sharing your honest thoughts. I think one of the beautiful things about Disability Pride is that it doesn’t have to mean the same thing to everyone. We all experience disability differently, and our feelings about it are valid.
For me, Disability Pride doesn’t mean I’m happy to be disabled or that I enjoy the challenges that come with being totally blind. It means I’ve stopped apologizing for who I am. It means I recognize that I have value, dignity, and a right to accessibility, accommodations, and equal opportunities.
Disability advocacy has become an important part of that journey for me. To me, advocacy means educating others, sharing my experiences, listening to other disabled voices, and speaking up when something isn’t accessible—not only for myself but for others who may not yet feel comfortable using their own voice.
Your post is a reminder that Disability Pride isn’t one-size-fits-all. We all arrive at it in our own way and in our own time. Thank you for being willing to share your perspective. 💙♿
I’m glad you labored so much over this because it’s my favorite disability pride piece, especially the part I restacked. You spoke for me as well. Thank you ❤️
This filled my cup, David. Thank you so much, truly.
Thank you Emily - I’m a Mom supporting my daughter who has Down syndrome, and I have always struggled with her needing to be out loud and proud or just making sure she can live her life, like anyone else, in a typical neighborhood, with a job and friends and church and family. I tend to land on the approach that her just living her life like everyone else is her best advocacy. But we cannot ignore the new threats to her life, your lives, the country as a whole. And what’s the point of reversing this? It doesn’t make economic sense, let alone the loss to our communities. State by state we need to be vigilant to any reversal of community living policy and funding. 👍🏻
I hear you, Patricia. I think so many of us are caught between the constant vigilance and just *existing*.
Echoing David below, this is my favorite disability pride piece too 🫶
That really, truly means the world me, Jackie. I hope Disability Pride Month was kind to you.
Thank you Emily. I was diagnosed as a teenager. It took me about a decade to become proud. My diagnostic label is so heavily stigmatised. Now at 52 years I am a proud Mad, Queer Woman and exhausted. Your article resonates on so many levels. Pride is important because it subverts notions of disabled lives as shameful, tragic, and pitiful. On the flip side, that subversive work takes spoons when required for a particular moment in the calendar - a calendar which is centred on able-bodied time in the neoliberal capitalist soup. If we do this to what Alison Kafer terms 'criptime' we could insist that our pride is fluid, flexible, and contingent on the moment. Perhaps pride month should centre more on the conditions which enable us to be proud, rather than on individual efforts to muster such an emotive state on demand.
Tova, I really appreciate your reframing of how we can embrace pride in a way that isn't so neat and linear.
Yep yep yep! Everyone tells me how good it is to hear my voice and learn from me and sometimes I’m just tired. Charming and fun to read, but tired. And perform far less than you! Oof.
Totally hear you. How exhausting to exist as disabled, truly.
Thank you for this. I too get tired of feeling like I have to perform. My disability is only a part of who I am and pride for me was being able to go out to Walmart, shop and just be and buy a new pair of jeans or a roll in the park. I take "pride" in being an American and being a part of a family who has deep tires and a long history of protecting democracy and a strong faith in community, multiple religions and faiths, and the Constitution and hard work-the right to work, the right to vote. Every male in our family has fought in an aAmerican war since 1812 and before, Great Grandma was DAR, she fought for woman's rights to vote, my other Grandma was born in Colorado and had a Dawes number- so I take pride in inheriting their pride and determination and how to blend it with disability democracy as well. Thank you for all you do!
Right there with you. And I can imagine that, since you were so publicly on the national advocacy stage at such a young age, this feeling has been lifelong. Truly grateful for you!
This is clearly written and clearly on point. Thank you.
Appreciate that so much, Eleanor. Always grateful for your words and wisdom.
Thank you - this was wonderful
Thank *you* for reading, Tony!
This piece resonates with me, as it parallels feelings I have about being queer and pride month for the queer community.
Thank you for continuing to be such a wonderful writer. I learn something everytime from you.
It means the world to know this resonated, Nicole. Sending all the good vibes your way.
There are so many aspects of the difficulty in writing about disability pride while being under intense scrutiny and discrimination that deeply resonates, especially this year. And, I’ve had to reflect on the data that says, people are happier when they turn their attention to gratitude and acts of kindness. Because, nothing else outside of this will protect my peace. The act of turning our attention to gratitude is rather similar to that of demonstrating resilience. Pushing through barriers and challenges while paying attention to our resources, strengths, and needs. Finding peace amidst the chaos.
This is SUCH a necessary reminder, Lisa. Gratitude and kindness get us through...even when they feel so far out of reach. I appreciate you reading this.
I truly believe disability advocacy is about making sure everyone has an equal opportunity to participate, contribute, and belong. Accessibility isn’t about asking for special treatment—it’s about removing barriers so everyone has a fair chance. I’d love to hear your thoughts, too. What does disability advocacy mean to you? 💙♿
Love this, Emily! So much truth here. Thank you for sharing and can't wait to talk with you this Sunday!! 💗
Something tells me this all boils down to Trump having to spend extra money or install something that conflicted with his gawdy baroque taste in a building project as a reasonable public accommodation. The offshore windmills he thought ruined the view from one of his golf clubs have made him intent to stamp out all wind energy projects.
Anyone who resists making the world more accessible pokes a finger in the eye of fate. Illness, accident, or simple aging can make any one of us dependent on accessible public spaces to continue living independent, productive lives. There is no bright line between able and disabled. Being human means having a unique collection of abilities and differing needs for assistance and accommodation.
Emily, thank you for sharing your honest thoughts. I think one of the beautiful things about Disability Pride is that it doesn’t have to mean the same thing to everyone. We all experience disability differently, and our feelings about it are valid.
For me, Disability Pride doesn’t mean I’m happy to be disabled or that I enjoy the challenges that come with being totally blind. It means I’ve stopped apologizing for who I am. It means I recognize that I have value, dignity, and a right to accessibility, accommodations, and equal opportunities.
Disability advocacy has become an important part of that journey for me. To me, advocacy means educating others, sharing my experiences, listening to other disabled voices, and speaking up when something isn’t accessible—not only for myself but for others who may not yet feel comfortable using their own voice.
Your post is a reminder that Disability Pride isn’t one-size-fits-all. We all arrive at it in our own way and in our own time. Thank you for being willing to share your perspective. 💙♿