Empowering Disabled Adults Through Community: Weekend Retreat at Easterseals Massachusetts

by Erin Hawley

By Grant Stoner

Last month, Easterseals Massachusetts celebrated its annual mentorship retreat for young adults with disabilities. The Empowering You 2024 Mentorship Retreat featured activities and events like workshops emphasizing community building, handcrafted art, games, and several guest speakers. For disabled individuals living in Massachusetts, this annual event encouraged embracing your disabled identity, building support throughout your community, and, more importantly, the capability to confidently and comfortably empower oneself.

Empowering You is the culmination of efforts from Easterseals Massachusetts’ mentorship programs Thrive and Brothers Against Discrimination (B.A.D). While Thrive is specifically for disabled young women, and B.A.D for young men, both groups seek to help disabled members promote and advocate for themselves as confident disabled members of society. I spoke with Easterseals Massachusetts Youth Program Manager, Desi Forte, who explored this year’s mentorship retreat theme and its varying activities, the importance of accommodating numerous disabilities, and her hopes for the future.

What Is Empowering You?

Confidence and self-worth are important tools for any individual. Yet, for disabled people that may struggle to feel welcome in a society that can still pose numerous inaccessible barriers, as well as general notions of ableism, empowerment is crucial for daily living. While Thrive and B.A.D regularly develop programs to create and refine self-help skills, Forte explains it was important to have the annual retreat focus on the overall theme of empowerment.

“The focus of the program was really around empowering people with disabilities by creating these communities,” Forte said. “With the theme of Empowering You, we were trying to find an all-encompassing theme that was broad in terms of scope of what we could cover. Really emphasizing the point around empowerment because that’s what these programs were built to do.”

The annual mentorship retreat took place over a weekend to allow attendees time to engage with activities. Forte notes that the Friday and Saturday were primarily reserved for members of B.A.D, while Thrive members met on Saturday and Sunday, with intentional overlap on Saturday for both groups to connect with one another. Forte explains that approximately 18 attendees within each program stayed for the event, with ages ranging from 15 to adults in their 50s. Yet, despite the vast differences in age, the event provided activities for all to enjoy.

“There were activities around the theme of empowerment,” she said. “There was an art activity where individuals created prints just showing what empowerment means to them. There were speakers around leadership within the disability community and beyond, and how they can be leaders in their lives. There was a lot of structured down-time as a way for these community members to connect with one another to build organic mentoring and empowering relationships from the different generational communities being able to connect with one another.”

Empowering Through Care

Each annual mentorship retreat brings attendees to new locations, and Empowering You was no different. Hosted at Bridgewater State University, members and volunteers were given access to the facilities of the college campus, including residential halls. While this was a great way to directly bring disabled individuals into local communities, it also provided its own logistical challenges.

For many disabled people, traveling, and especially staying overnight, can be a complex process. From transferring medical equipment to extensive care regimes, many disabled individuals do not have the luxury to temporarily bring their care to other areas. Thankfully, Forte notes that the event was able to comfortably and successfully accommodate everyone.

“One of the strongest positive outcomes we always see, is that because this was an overnight event, we were able to support [Personal Care Assistant] needs if that’s something participants need to be involved,” she said. “[We also provide] other needs they may have that may be a barrier for them to participate in other overnight events. Just getting a chance to be overnight, away from their everyday environment, is always a strong part of this program.”

Some attendees, as Forte explains, are experiencing their first overnight event. And for others, these retreats are something to look forward to annually, allowing disabled individuals to connect with peers, as well as comfortably and confidently spend significant time away from their home environment. Forte notes that one of the most common pieces of feedback after each event is the joy with being able to stay overnight. “The feedback that we’ve gotten many, many times, and this year especially, is just being able to be in the space is something that those involved don’t get the opportunity to do very often.”

Moving Forward

Empowering You was not the only event available this year. Forte notes that Easterseals Massachusetts consistently offers numerous events and retreats, both virtually and physically, for disabled attendees and mentors alike. For disabled individuals, these create opportunities to build not only self-confidence, but a sense of community, something crucial for marginalized groups like disabled people. And as each event draws to a close, Forte is hopeful that they will continue with new themes and places.

“The hopes for future events are to just keep them going and to keep them growing,” she said. “To be able to keep doing these and offering these opportunities. The only concerns are always around funding and making sure that that’s available to support these programs, and to support these opportunities.”

Empowering You more than embraced its theme. The intersections of different mentorship groups, community building, and creating necessary tools to empower oneself were felt across the college campus. For disabled individuals, finding a sense of belonging internally, as well as through a community, are crucial components of long-term care. Without community, disabled people may struggle to engage within a traditionally nondisabled society. And while these events continue, self-empowerment and connecting with others will provide even more opportunities for disabled individuals to develop a sense of belonging. And as Forte explains, these retreats and events are integral to the disabled community.

“As a person with a disability myself, I completely understand firsthand what being involved in these programs means,” she said. “And really, what it means for me to be able to give back to this community that means so much to me.”

To learn more about Easterseals Massachusetts, please visit their website. 

Taking Charge of Your Story: Why Representation Matters

by Blog Writers

By Christina Gann

The first time I ever encountered a queer narrative in a video game was The Last of Us in 2013. The main game was released in June during LGBTQIA Pride month but did not include an openly queer narrative released in the main story playthrough. It was a prequel, an add-on character story that you needed to purchase separately after the release of the main game. When I started up that game, I had no idea that the story they were going to include for the main character Ellie William would have such a profound impact on me. The story took you on a heartfelt journey with Ellie’s best friend Riley that concluded with Ellie’s first kiss … and she kissed *gasp* Riley?! … another girl!

I was over the moon. I couldn’t hold back my tears and felt a sense of connection to this story and to the world around me in that instance. I cried because I felt validated and connected to this storytelling even if I had never experienced a queer teen romance of my own. Ellie was me. Teen romances are universal, a part of the human experience. To look for companionship and emotional security in another person is an experience that surpasses color, sexuality, ability and telling stories that include these universal experiences with diversity and inclusion weaves a tapestry interconnecting us as humans. 

As rare as the queer perspective is in video games, good representation of people with disabilities is even rarer. Rich, diverse stories of characters with disabilities are desperately needed in mainstream media. Accurate representation is key to destroying limiting beliefs about the lives of people with disabilities. Stereotypes and false beliefs created by misrepresentation give a false impression of what it’s like to live in the world with a disability, creating disconnect and isolation. Disability is still regularly served up as a trope to invoke fear in the horror genre in both video games and cinema. Sending a message that disabled people should invoke fear instead of celebrating the life of the individual and the way they approach the world in different ways. This needs to be replaced with characters and stories that resonate differences to be celebrated. 

When I was a young adult, my family and I would go to medical conventions to learn new information and technologies that could help accommodate my needs while living with short gut syndrome. Short gut syndrome is so rare that these conventions were the only way that I ever got to see or meet other people who lived a similar experience to my own. I felt included, accepted and understood more there than anywhere else. Meeting all these young people like me who had the same challenges, the same desires, same hopes made me see that it was all possible if I was allowed to exist without the constraints and limitations put on me. 

Seeing representation of yourself is healing, especially when you exist outside the boundaries of the status quo. To be able to relate and identify with the rest of the world is profoundly interconnecting. Everyone wants to feel seen, everyone thirsts to be understood and accepted as they are. When we tell stories with accurate representation, we create an understanding, and through understanding, we create unity. The stories we tell, the way in which we represent ourselves to each other is so vital to the way in which we relate to each other face to face.

We believe what we see and this becomes our reality. I was taught at a very young age that being different meant danger. That being disabled meant that you were limited in what was possible. That accepting disability meant accepting defeat. I grew up as a witness to a world that mistreated, misrepresented and abandoned the disabled. I struggled to relate what I saw to how I felt growing up disabled. I didn’t feel like I was limited but that the world was not made for people like me. I remember going into my school counselor’s office and being told what I was capable of achieving. What was possible and what was not going to happen for me given the limitations she created for me out of assumptions fueled by societal views. I was force fed my limitations on a platter with no exceptions. Without allowing me to determine my path and how I would approach life in my own unique way. Without giving me a chance to thrive.

I went on to dismantle every limit put in front of me. I have done things I was told were impossible. 

Someone told my story, someone else limited my potential and capabilities without my permission. No one should have their story stolen or misrepresented. Misrepresentation creates false images and harmful stereotypes of people and their lived experiences. We are still fighting for accurate representation at the intersection of queer and disabled. To have a hand in telling our own stories is vital to diverse and suitable representation that changes how we are viewed and treated in the world. 

When we leave room for all stories to be told, we open the door to alternate reality, one that aligns with our humanity, compassion and understanding.  No one should have their story or their potential snatched away. We all deserve the chance to thrive and live out loud and proud of all that makes us who we are. Diversity, accurate representation and inclusion bridges the gap between what we think we know about each other and what connects us to each other, including us all in the conversation.   

Advocacy makes our stories and existence visible and we are infused back into the pack as one community supporting one another through our individual experiences. When you are ready, tell your story as loudly as you can because I assure you, someone out there needs it so that they can have the courage to tell their own. 

Christina Gann is a content creator, artist, and scientist based in Colorado. They love horror movies, gaming with friends, and their dog, Oreo. You can follow Christina on Twitch, TikTok, Instagram, and X.

Read Christina’s other blog, Finding Pride at the Intersection of Disabled and Queer.

Disability Pride, Queer Pride, and the Medical Model

by Blog Writers

By Mids Meinberg

As we enter into Disability Pride Month, I believe it is important to think about the ways that disability and queer rights have similar struggles. In particular, both have a history of navigating the divide between the medical and social models.

The medical model is the more traditional model for thinking about both disability and queerness. Essentially, it proposes that these are medical conditions that require treatment and, ideally, a cure. The social model, in contrast, proposes that disability and queerness are both identities, which exist to be embraced — not erased.

Psychology is a relatively young science, but in its foundational texts, homosexuality is described as a mental pathology. Within the first DSM, released in 1952, homosexuality is placed in the same category as pedophilia and sadism. The DSM-II, originally released in 1968, kept homosexuality as a mental illness, but only during the first six printings. (Psychiatry.org)

Between the sixth and seventh printing, the gay liberation movement had begun in earnest, spurned by the famous Stonewall riots that led to the creation of queer Pride. As the movement gathered strength, it led to the seventh printing (in 1973), revising the description of homosexuality to no longer describe it alone as a psychiatric disorder. It did, however, maintain that a person with homosexual desires was a person who needed treatment.

This would remain the stance of the DSM until the DSM-5, released in 2013.

While queer Pride began in 1970, starting on the anniversary of the Stonewall riots, Disability Pride did not begin until 1990, in celebration of the passing of the Americans with Disabilities Act. It did not begin to have widespread celebration until the early 2010s, and is still not nationally recognized.

Photo from Disabled and Here, photographed by Chona Kasinger.

Despite the successes of the struggle for the rights of both disabled and queer people, there is still much to go to assure full equality for both groups. The medical model is still in common practice for many disabilities, and indeed is held by some disabled people as well. Our society creates barriers for disabled people despite the laws passed like the ADA, preventing disabled people from being able to live their lives to the fullest. And while the blame lies on these barriers, disabled people are constantly told that it is their disability at fault.

Queer people have resisted the medical model since it was first applied to them, and efforts to pathologize queerness have always been rooted in discrimination and hatred towards queer people. Despite this rejection of the medical model, some queer people do require medical technology in order to best fit their desired identities, which is most visible in trans people.

While it is entirely possible to transition one’s gender without the use of any medical tools, options like HRT, gender-affirmation surgery, and facial remodeling are very useful in helping a trans person to fully identify as their true gender. This use of medicine does not mean that the medical model applies to trans people, though.

Meinberg

I use medicine to help ameliorate my depression and anxiety, but this does not mean that my depression and anxiety are inherently medical issues. If I lived in a society that was more accommodating of depressed people or anxious people, I might require less medication. But even if I chose to continue using medication, that is merely my choice in how to best navigate my neurodivergence so that I can truly be myself.

I would never want to be cured completely of my depression. For all of the troubles it has caused me, it is still a part of me and a part I am deeply proud of how it has helped to shape me into becoming a better person. The idea that I would be better off if I had never had depression is simply incorrect. Some depressed people feel differently though, and that is a valid perspective to have. There is no denying, though, the transformative effect of having a disability.

Similarly, there are some trans people who wish they were assigned the correct gender at birth. Transitioning is difficult due to large social barriers and lack of affordable access to necessary treatments, and being assigned the correct gender at birth is much easier. However, nearly all transpeople are happy that they have transitioned and the important part is that they have become who they wish to be. (Gender GP) In addition, for many trans people I know, their transition is an important part of their identity — not simply being the right gender, but being a trans person of the right gender.

This is because these trans people are able to find community together via their transness and are able to develop new models of looking at their gender via the lens of being trans, much in the same way that people with queer sexualities look at relationships differently and are able to form different kinds of romantic and sexual bonds because they are not the default.

As disabled people, we can apply many of these lessons that queer people have learned to our own struggles and our own identities and learn how best to create a space in the world for us. The social model recognizes that disability is a part of disabled people’s lives and it changes us, not necessarily for better or for worse, but into who we truly are. Even if I were to no longer experience any symptoms of depression, I would still have been shaped by that depression and I cannot write it off of my identity.

An ableist society seeks to shame us for our disabilities, seeking to reinstate the ugly laws and push us away from visibility, to pretend like we don’t exist – and that when we do exist, our disabilities are problems to be solved. For a very long time, this was also the case for queer people; society wished for queer people to be put back into the closet, to be denied their existence and their rights. But like queer people, disabled people have continued to fight, and so long as we have pride in our hearts and know that we deserve to exist, to be seen, to be counted as equals no matter what society has to say, we will push forward into a better tomorrow.

Happy Disability Pride, everyone.

Mids Meinberg is a writer and game designer working out of New Jersey. They have an AA in Creative Writing from Brookdale Community College.

My Disability is Part of My Story

by Blog Writers

By Liz Meckes, Director of Development, Easterseals Southeastern Pennsylvania 

Surprise! I have a prosthetic eye – that I choose not to wear.

After losing my left eye to cancer in 2022, I had various eye patches for 6 months while my face healed. When I healed enough, we started the process for a prosthetic. My sticker, as my 4-year-old calls it, is beautiful. It looks incredibly realistic although the eyeball doesn’t move.

They put the final product on my face in June 2024. I thanked them, walked out of the doctor’s office, and broke-down.

Covering my “socket” as we call where my left eye used to be, was an overwhelming reminder of what I lost. Of what I had to fight. Of what I’m still fighting and recovering from. It felt like I was hiding.

My face, my scars, they are part of my story.

Do I get stared at? Yes. Do I love kids asking, “why do you have one eye” at daycare drop-off, at the playground, and at family gatherings? No.

Do I want to hide my face, my disability? NO!

SUPPORT YOUR KIDS IN ASKING QUESTIONS! I have the privilege of helping children be more inclusive, accepting, and engaging by answering their questions. That kid on the playground that is different – more times than not, they would rather be asked a question than avoided and ignored.

Let your kids ask questions, even when it’s uncomfortable for you. Teach them to satisfy their curiosity about differences while asking what they have in common with others.

When I answer kids, I acknowledge that I had something hurting me, that we said goodbye to my eye and now I don’t hurt. But, even though I only have one eye, I love baseball, swimming, riding bikes, reading, and playing with my son. I ask them if their hair is straight and note mine is curly. We are all different and that’s okay.

July is Disability Pride Month. Celebrate with me by building an inclusive society that does not isolate, disrespect, ignore, and limit the potential of all community members.

Liz Meckes is a dedicated nonprofit fundraising executive, known for her enthusiasm for people and her deep love for Philadelphia sports teams. Her career began with creating memorable fan experiences for the Philadelphia Freedoms of World Team Tennis. This passion for connecting with people naturally led her to a career in fundraising, where she has excelled in building relationships at Easterseals. Diagnosed with an invisible disability, Crohn’s disease, in her teens, causing chronic fatigue and nutritional challenges, and eventually leading to kidney failure. After receiving a kidney transplant in 2014, she went on to have her son in 2020. In 2021 and 2022, she faced squamous cell carcinoma in her left temple sensory nerve, resulting in the loss of her left eye. She is adapting to single-eye vision and proud to continue to be a member, ally and advocate for the disability community.

Becoming a Chef at Easterseals South Florida’s Culinary Arts Program

by Erin Hawley

Sebastian Millan loves to cook Italian dishes like pasta and pizza. He also enjoys making Cuban food like arroz con pollo, pulling from his own heritage. In 2021 at the Easterseals South Florida Youth Culinary Arts Summer Camp, Sebastian discovered a passion for cooking, learning skills needed to craft a diverse range of cuisines.

Sebastian

The Youth Culinary Arts Summer Camp is a seven-week program for students with disabilities, including autism, in grades 6 to 12. Participants like Sebastian train hands-on with experts in the culinary arts, learning practical job knowledge and financial literacy to aid them in transitioning from school to employment and independence. The Easterseals Academy staff noted how Sebastian’s work in the kitchen has helped him excel in math and build leadership skills. 

Easterseals South Florida offers many opportunities for educating youth during their summer camps, including field trips that include experiential learning. “We’re always seeking site partners that specialize in sensory opportunities and other enrichment offerings. So the students enjoy a lot of outdoor and indoor field trips. They bring back a great deal of knowledge and gratitude. They get to work with animals, they get to enjoy performances…so it’s very fulfilling and very diverse,” says Pietro Bonacossa, Vice President of Development.

After summer camp ended, Sebastian wanted to continue cooking. He then joined the Easterseals Culinary Arts High School Program, which also includes the hands-on training from summer camp alongside traditional classroom instruction. Academic content follows the B.E.S.T. (Benchmarks for Excellent Student Thinking) Standards and is tailored to meet individual student needs. Students can work together in small groups on different stations, like sanitation, food prep, and food service. They also have the opportunity to earn a ServStaff sanitation certification and learn Culinary Arts skills following the ProStart Curriculum. High school graduates can stay enrolled in the program until the age of 22. 

Through the support of the Easterseals family, Sebastian started an internship last year at Nicklaus Children’s Hospital in Miami, working in their dining services department. He’s gained further skills in customer service, food prep, and creative food presentations. Earlier this year, the hospital hired him part time with benefits, and he is now working full time for the summer.    

Sebastian is but one example of the importance in creating inclusive, equitable spaces where people with disabilities can learn and thrive alongside their peers, gaining tools that foster independence and teamwork.    

Sebastian shared that his favorite part of being a chef is the collaboration between everyone that works in the kitchen, and being able to simply do what he loves with the support that he needs. Sebastian’s dream is to own a breakfast food truck. If that’s successful, he wants to open his own restaurant. He said, “The people at Easterseals have a future, they can learn new abilities to have their own future and follow their dreams.”

To learn more about the incredible work of Easterseals South Florida, visit their website. Thank you to Sebastian Millan and Pietro Bonacossa for their contributions to this blog post. 

We Are Fighters and Survivors: How Disability Pride Changed the Game

by Blog Writers

By Jennifer Msumba

Hi, my name is Jen Msumba. To me, having pride in my disability is about first accepting who I am, my differences, difficulties and gifts. And then taking that a step further and seeing how my disability has helped me in achieving my life goals and dreams.

When I was a kid, I hate to say it, but, my autism caused me nothing but pain and anxiety. I was bullied, misunderstood by my teachers and had very low self esteem. Also, I was extremely fearful of everything, clinging to my mom every night and when we were out in public. I had body tics, which caused me physical pain and discomfort and severe obsessive compulsive disorder, from which I spent hours a day doing rituals to “keep my mom safe” and battling intrusive thoughts.

I thought I was, as one bully called me, “a waste of a human.” I didn’t see the beautiful little girl that I look back at old pictures and see. I was funny and kind. I didn’t realize what a quick mind I had for words and math. So quick that I was able to do my tests, and then erase everything and rewrite it because my obsessions told me that I wrote it wrong — and still finish in time. But all I saw was the bad, because I had not yet been able to learn about myself — and that there were others like me out in the big world.

It would take me years, well into my adulthood, until I could explore and learn more about my autism. I wasn’t alone! God made me, Jen Msumba, just as I am and He knew who I would become. My soft gentle heart, which is easily broken, is also quick to love. I have empathy for other people and for animals. I see details that most people miss. This helps me in learning quickly. Using the free flow of information on the internet, I have taught myself how to produce music, write and edit films or books — and I am even a great basketball player! I can shoot free throws really well using my spatial skills.

Sometimes having pride can mean not having humility, and that is not a great attribute in my opinion. But it can also mean that a person is content with the unchangeable things about themselves. And this is what disability pride means to me.

There are certain things about myself that are going to be harder for me than for neurotypicals. But I honestly would not change having autism. I would love to get rid of my OCD and anxiety, though. If I am being honest, those are really hard to deal with. But life is a balance. And the good parts of my sensitivities wouldn’t be there without the hard parts.

Every day I learn more about myself. I never stop learning. And every day I get better at being me. People from my past have done a lot of damage, but I always had a fighting spirit. Deep down, it was planted in me that I was just as important as everyone else. I have a God-given plan and a purpose and I am loving to see it all unfold!

I really would like to tell others who feel like I did as a kid that it is never too late and that you are important. No matter what your disability is, you have a right to a happy and fulfilling life, whatever that looks like for you. I would say keep fighting for what you know to be true deep down inside. Go for your goals and dreams because they CAN come true!

We are fighters. We are survivors. And the world used to hold us back. But this is our time to come out from being hidden away and show what we have to give and to receive what we deserve. Which is to be treated with dignity and respect. This is our time to be proud.

I am now a musician who successfully writes songs for film, television and ads. And with this job, I am seeking to obtain a more independent life for myself. I’d love to have my own little house on a farm and have cows, chickens, dogs and any other animals that come into my life and heart. I want to keep writing, making music, films and telling stories.

I am proud to be Jen Msumba. With my brown skin and curly hair. With my tics and repeated words. I now have doctors who understand and help me with the hard parts, like my OCD and anxiety, and I know I am not fighting alone.

Disability pride has certainly changed the game for me. I see folks like me on TV, in ads, and out in public. I finally see characters I can identify with in my favorite shows and movies. I am grateful to organizations like Easterseals who are helping us empower ourselves with things like blogs and social media content, and the biggest for me — the Easterseals Disability Film Challenge!

In 2020, I made a little film for the challenge called The Fish Don’t Care When It Rains, and I won Best Film that year. That changed everything for me. My outlook became brighter. For the first time, I started to see myself having a future that I choose. I wrote my first book, Shouting At Leaves, which continues to sell successfully to this day. All because of that challenge which showed me that I have a voice. Even if I hadn’t won, that contest would have changed me.

I want to encourage others, who might not think they have something to say, that your voice matters! Be proud to be you and shout to the world in your own unique way.

Jennifer Msumba is an author and award-winning musician on the autism spectrum. She won her way onto the stage of Fenway Park on August 24, 2023, as part of the Doug Flutie Jr. Foundation for Autism STARS of the Spectrum event. Msumba’s newest album, Atypical, illuminates her life story. From Highway 93, a sparse acoustic arrangement about her first psych hospitalization at age 15, to young adult longing for relationships, highlighted in the humorous yet revealing Minus Your Girlfriend, We’d Make A Great Pair. Jennifer has now found herself exceeding even her own expectations, outlined in the folksy anthem Up, which wraps her album in the most uplifting way.

Finding Disability Pride Through Community

by Blog Writers

By Grant Stoner

July is Disability Pride Month, a time for disabled individuals to reflect, celebrate, and recognize their lives. Since July 26, 1990, the United States has celebrated Disability Pride Month to commemorate the passing of the Americans with Disabilities Act, an act which provides protections to disabled people from discrimination. Regardless of why you celebrate or the reason for the creation of Disability Pride Month, July is a time to raise awareness regarding the disabled experience.

For me, July’s acknowledgments and festivities are a concept I’m still learning to accept. Despite living with a physical disability my whole life, I’ve only recently embraced my disabled identity. While I can confidently call myself disabled now, I struggled to come to terms with my limitations and identity. It was only through my work as a disabled reporter and interactions with the disabled community that I finally understood who I am.

Ignoring My Disability

I have numerous fond memories of growing up in the southwestern region of Pennsylvania. From school picnics to a local amusement park, to spending hours cruising through my neighborhood in my red wheelchair, I loved the freedom of exploration. Yet, despite my fondness of the outdoors, I never viewed my wheelchair as an accessibility tool, rather just a pair of legs… with tires. As a child and young adult, I did everything I could to shy away from my disabled side. And every awkward interaction with the public or painful hospitalization made me shrink further into myself. I didn’t want to be disabled, and by refusing to acknowledge my limitations, I thought I could trick myself into being able-bodied.

Throughout my entire life, I’ve always used accommodations, accessibility, and outside assistance to do anything and everything. I’m unable to feed myself, dress myself, use traditional gaming controllers, sign for long periods, and even set myself up on my computer to work. Despite these obvious accessibility needs and ways of disability survival, I still thought of myself as able-bodied. And it wasn’t until I started writing that I truly understood the importance of accessibility, and my role as a disabled individual.

Accessibility Journalism

Prior to beginning my work as a disabled reporter in the games industry, I originally went to school to become a traditional games journalist. I wanted to review the newest titles, speak with legendary developers, and highlight the latest trends, all without exploring the disabled perspective. Since I didn’t want to discuss accessibility, I convinced myself that nobody wanted to hear these thoughts either. And for several years, I followed these beliefs in the school newspaper. I wrote reviews that, for years, I was never proud of, but unable to accurately explain why. They lacked depth, substance, and general feelings that I, the player of each game, was unable to properly articulate. It wasn’t because I lacked the skills of a writer. I had incredible editors to polish my words with each piece. Instead, it was my lack of connecting with the game without mentioning my needs as a disabled player.

Approximately six months after graduating with a bachelors in Multiplatform Journalism, one of my best friends and editor of the school newspaper informed me that my Nintendo Switch review won second place in the Keystone Press Awards review category. Why? It was my first review where I explicitly referenced my disability. Prior to writing the piece, I was going to submit a standard review, just like my previous work for several years. However, my friend told me to write it from my perspective of someone with a physical disability, threatening to not publish the story if I did not put myself into the piece. From that moment on, I felt myself understanding the importance of embracing my disabled identity. And even though I initially struggled to accept these newfound emotions, I continued to write as a disabled journalist.

Finding A Community

In 2019, I began working at Can I Play That, a publication dedicated exclusively to the disabled perspective in the gaming industry. My role as Mobility Editor was to publish reviews from a mobility lens, but to also interview developers and connect with the disabled community. At first, I was hesitant to accept this role. How could I cover the thoughts and needs of other disabled individuals when I only recently began advocating for them myself? And it was admittedly a challenge. I was fearful of asking the wrong questions, posting the wrong content on social media, and misrepresenting the words of a community that, despite living in my entire life, only recently embraced. Yet, my fears were calmed relatively quickly. Not because of my work, but rather the warmth and kindness of my disabled peers.

It’s now 2024, and this September marks five years since I became a disability reporter. Since then, I have met some of my closest friends, had the privilege of interviewing incredible consultants, and even met my partner through work. And every person or group I just listed has one thing in common – they are all part of the disabled community. For so long I fought so hard to erase my disability, to exist in a world where I wasn’t disabled. But in the five years that I’ve been exclusively working with the disabled community, fully embracing my disabled identity, I have never felt more welcomed by others, and most importantly, at peace with myself.

Disability Pride Month is multifaceted with its importance. For some, it’s a time to continue pushing for the rights of disabled people. For others, it’s a time to celebrate the disabled experience with friends and family. For me, it’s a month of reflection. I wish I could go back in time to tell my younger self that it’s okay to be disabled. I wish I could tell him about the amazing community that was waiting for him. But now, instead of mourning a childhood without a love of disability, I can confidently start each day feeling proud of myself. For this Disability Pride Month, I’m proud to be disabled.

Grant Stoner is a disabled journalist covering accessibility and the disabled perspective in the gaming industry. When not writing, he is usually screaming about Pokémon or his cat, Goomba, on social media.

Navigating Queer and Disability Spaces: Rikki Poynter’s Journey as a YouTuber

by Blog Writers

By Rikki Poynter

In 2010, I started a YouTube channel in hopes of finding anything and everything: friendship, community, career, a life.

I spent my entire life stuck in an abusive home that seemed impossible to get out of after high school because of ableism in society. I started off in the beauty niche until around 2013 when I started to lack inspiration, and it became too expensive to keep up with the newest trends and products on zero income. But what was a girl to do when makeup and YouTube were all that she knew?

I’m deaf and I grew up mainstreamed. I went to public school before and after my diagnosis, had zero access to ASL (American Sign Language) and the deaf community, and zero access to, well, anything and everything, really. There was a deaf school about a half hour or so away from where we lived, and my dad knew about it, but nobody talked to me about it or asked me if I wanted to go. My mother, who became deaf at the age of three due to Rubella (German measles), grew up the same way. I’m pretty sure her upbringing inspired mine. After all, it was all she knew and all my dad knew. And the audiologists never brought up deaf schools or ASL, only spoken language and hearing aids that I guess we couldn’t afford since I never got them growing up.

I was in my early 20s when I wanted to find out more about being deaf and the deaf community. It started with finding deaf makeup artists. From there, it spread to finding deaf people from all around the country on Tumblr. I then moved on to YouTube, where I found mostly deaf people that grew up in deaf families and with ASL. It was nice to see, but I still felt left out because I didn’t have that. I was hoping to also find more people like me.

With a little luck, I decided then that I wanted to make the shift from beauty content to talking about my life growing up as a deaf person who didn’t have ASL or a deaf community. Someone who grew up oral, but wanted to learn ASL. Someone who wanted to find that community. I also talked about accessibility on the Internet, the lack of captions on videos, and how to caption/subtitle videos. When I started to have chronic pain and fatigue, I talked about disability in general. That shift gained some success. I was making connections with other deaf and disabled people online and I was gaining traction on social media, something I was hoping to make some sort of career out of one way or another.

Fast forward to 2015 where I started to include more lifestyle content. Part of that included talking about sexuality: pansexuality, bisexuality, whatever it was at the time. (I use the term bisexuality now, but does it really matter?) I gained a few online LGBTQ+ friends from those videos too.

Things seemed to be going well. We’d engage with each other’s content, send each other messages, and look forward to meeting and seeing each other when events like VidCon and Playlist Live came around.

Rikki at VidCon

At first, socializing at events was great. A bit difficult, but great. Things weren’t perfect as communication sometimes fumbled due to lack of hearing aids and fluency in ASL (both from me and my hearing and non-signing peers), but I felt included. But things started to change as years went by. I began to feel more left out of both the disability and LGBT groups, and the LGBTQ+ groups were already difficult to feel included in because I always felt like I wasn’t “bisexual enough.”

I wasn’t invited to hangouts people had. If people hung out in groups at the afterparty events, I wasn’t invited to be part of the group. It was the same when they went to their hotel rooms to chill out after. Sometimes I’d text about plans and it felt like I was forgotten about because I didn’t receive a text back. Sometimes I did, with a “I’ll let you know!” but after that, nothing.

I know that I can be more difficult to socialize with due to the communication barrier. Deaf people don’t have personal interpreters at the hip, and interpreters typically aren’t hired to be at the afterparties and personal socializing sessions. Having to ask someone to repeat themselves constantly isn’t fun for either party. I fear that people think I think I’m “better” than them because I look like someone who doesn’t want to get involved in conversations and sits in the corner away from everyone else keeping to myself, when the reality is that I just have no idea what’s going on. It’s like Dinner Table Syndrome.

(Dinner Table Syndrome is when you are the only deaf person at the dinner table who signs. Family members and friends have a conversation aloud around the table and everyone but you understands, so you feel left out. This is typically used for the dinner table, especially during the holidays, but we use it for general outings too. I do, anyway.)

With all of that being said about my hearing, non-signing peers, both in the disabled and LGBTQ+ communities and the spaces in general, I often feel out of place in deaf spaces as well. We talk a lot about lateral ableism within our own communities. Sometimes that is the case, and sometimes it’s really just our own lack of confidence. I’m always worried about my ASL skills not being enough, especially as one would think they’d be much better than they were when I first started learning in 2015. But lack of being in a signing environment consistently can have you struggling with ASL fluency. I worry that when I don’t understand something, they’ll be annoyed with me. I worry that when my signing is incomprehensible, they’ll be annoyed with me.

Of course, it isn’t like this all of the time. I am grateful to the people that check in on me and ask me if I’d like to have coffee with them sometime. I’m grateful to my fellow deafies who allowed me to hang out with their group at the zoo this past weekend. I do still feel the most out of place in the LGBTQ+ spaces as it seems to be the hardest to connect to, but I enjoy seeing my peers and their posts on social media. We engage with each other’s queer-related posts from time to time, although it may not be as often as I’d like.

Regardless, I keep trying to find connections with people. If someone has an interest similar to mine, I’m excited to reply. If there’s something they have that I like, I want to compliment them on it. I want there to be a day where I no longer feel lonely and out of place, and I will continue to keep working toward that.

Rikki Poynter is a disabled (deaf, chronic pain and fatigue) accessibility consultant, writer, public speaker, and content creator. Originally a beauty vlogger on YouTube, she moved onto talking about her journey growing up as a mainstreamed deaf person trying to find her deaf identity and community all while trying to navigate an inaccessible world. Since 2013, she has talked about making the Internet accessible to deaf and hard of hearing people with captions, transcripts, and more. Her work has gotten the attention of many news outlets and she has worked with Apple, FireFox, Samsung, Google, and more.

5 Tips for Providing Transportation to Family Caregivers

by Blog Writers

This blog originally appeared in the NADTC blog.

In the quest to increase the number of rides given each month, transportation providers would be remiss if there wasn’t an effort to increase services to family caregivers. The Caregiving in the US 2020 survey showed that 80% of family caregivers provide transportation for their loved ones. With an estimated 53 million family caregivers in the US, that means over 42 million caregivers provide transportation for an older adult or person with a disability. Another eye-opening statistic, according to the same survey, is that only 25% of these caregivers received help with transportation. That is a large group of people who could benefit from transportation services, which means increased rides on your system for people who need them and reduced responsibilities for family caregivers.

Photo credit: Area Agency on Aging of South Central Connecticut, North Haven, CT

Family caregivers are adult children, spouses, siblings, parents and neighbors who help loved ones who are unable to live independently. They help with many things such as housekeeping, preparing meals, paying bills, managing medication and transportation. On average, family caregivers spend over 20 hours/week providing care, leaving limited time to care for themselves. This puts caregivers at a higher risk of health problems, depression and anxiety. High levels of stress can be alleviated for caregivers when they get help with some of their responsibilities. Transportation providers can be part of their support system by making sure rides are accessible to the people they are caring for as well as the caregivers themselves.

To get you pointed in the right direction, here are some things that you should know about family caregivers.

1. Caregivers often don’t know what transportation services are available and are too busy to research the options. It’s important to target outreach to family caregivers. Connect with caregiver support professionals at Area Agencies on Aging, Centers for Independent Living, Human Service agencies and non-profit respite organizations. Provide them with an inventory of available services that include details such as service area, time of operation, cost, eligibility and level of service. This information is the first step in completing the My Transportation Plan Tool which helps caregivers create a transportation support plan. Ask the agency to pass on the information to the caregivers they work with or offer to speak at a support group or caregiver class.
2. Caregivers see themselves only as family, not a Personal Care Attendant and downplay their role of providing support. This is important to remember when considering the ADA Rule that a Personal Care Attendant (PCA) can ride along fare-free. (See Chapter 9.8 in FTA Circular 4710.1) Understand that family caregivers frequently act in the capacity of a PCA but would never consider themselves to be a PCA. Check your language and be sure to explain that if the caregiver is assisting with a necessary task at some point during the trip, they can ride fare-free.
3. Caregivers worry about someone else taking care of their loved one. Train staff to work with older adults and people with disabilities. Use NADTC’s Access Matters videos to train drivers to be more sensitive to the needs of people who have disabilities who rely on public transportation. Consult NADTC’s brochure Assisting Passengers with Alzheimer’s and Dementia. Tell or show caregivers about the training you provide and the safety measures that are in place. Share examples of other riders with disabilities who have successfully used your service. Encourage caregivers to ride along at first to see how it goes.
4. Many caregivers and care recipients have not used public transportation before. Be sensitive to caregiver and care recipient’s hesitation to use your transportation. Teach them about the services you offer. Provide services like travel training and bus buddies and show people how to use online scheduling tools or apps to help them feel comfortable trying your transportation service.
5. Caregivers may need encouragement to receive help. Remind them that accepting help is a sign of strength, not weakness. Use empathetic language and offer practical examples of how your program can be a benefit for both the caregiver and the care recipient. Point out that while it might be easier to do it themselves in the short-term, learning how to use a transportation program will save time and provide options in the long run. After caregivers discover the benefits, they’ll thank you and come back for more.

The efforts you take learning about and serving family caregivers can be rewarded by increased rides for those who need them and new partnerships with caregiver support professionals.

Healing with Community and Self-Guided Care: Easterseals MORC’s Dreams Unlimited Clubhouse

by Erin Hawley

Sarah, former participant at Easterseals MORC’s Dreams Unlimited Clubhouse

Sarah joined Easterseals MORC’s Dreams Unlimited Clubhouse in 2017 when she was struggling with her mental health, motivation, and socialization. “Dreams Unlimited Clubhouse has helped shape me into the person I have become by giving me different skills and helping me learn how to socialize,” Sarah said. “I have come out of my shell. I’ve learned how to cook. I have learned better communication skills.” 

Easterseals MORC’s Dreams Unlimited Clubhouse is a mental health rehabilitation program, overseen and accredited by Clubhouse International, a non-profit organization that helps start and grow Clubhouses globally.  

Based in Royal Oak, Michigan, Easterseals MORC’s Dreams Unlimited Clubhouse (DUC) provides individuals with mental illness the social tools and professional skills needed to become more independent. Their approach revolves around a “work-ordered day,” where participants and staff upkeep and run the Clubhouse side-by-side, deciding what needs to be done and what skills participants want to engage in together. Following Clubhouse International’s model of psychosocial rehabilitation, DUC provides a cooperative and nurturing setting where members can progress toward recovery by accessing opportunities for employment, social interaction, education, skill enhancement, housing, and enhanced well-being. 

Bridgette, Easterseals MORC’s Dreams Unlimited Clubhouse member

Since the work is self-directed by Clubhouse members, the activities they can do are countless. Some participants learn data processing, cooking, and management, while others engage in banking and planning social events. Social events are important for Clubhouse members as they foster relationship building, improve social skills, and provide meaningful community experiences.  

Jacob Warsaw, Clubhouse Generalist, facilitates the work-ordered day, focusing on new members and providing support to anyone who lacks confidence in their tasks. He works with individuals to create a fulfilling work environment that aligns with their personal goals, which boosts self-esteem. Jacob says, “Rooted in the notion that each person has a unique contribution to society, Clubhouses play a significant role in fostering self-assurance and breaking the cycle of social and economic isolation commonly linked with mental illness.”  

Members can be placed in paid work when they feel they are ready through the Clubhouse’s Transitional Employment Program. This places them in temporary, entry-level job positions that the Clubhouse has developed in partnership with community employers, rotating members every 6 to 9 months. 

Joining the Clubhouse is a straightforward process and ensures the dignity and choice of those who want to join. After touring the building and enrolling, members are introduced to the staff and can choose who to work with, directing their goals and success. “These goals are fluid, evolving, and can be changed or completed at the member’s own pace. With this, members can achieve their goals to no end, get jobs and eventually tone-down their attendance, or stay at a gradual pace. Members do monthly check-ins with their staff to hold themselves accountable to their chosen goals and have added pressure from within to improve,” Jacob adds. 

David, an Easterseals MORC’s Dreams Unlimited Clubhouse member

Through engaging with the program, Sarah was able to find steady work and get back into her love of photography. “Because of Easterseals MORC and Dreams Unlimited Clubhouse, I’m learning how to better cope when I’m having a hard time. I now cope by using positive thinking and affirmations. I’ve become more independent, experience more of what life has to offer, and understand my mental health.” 

Easterseals MORC’s Dreams Unlimited Clubhouse is always looking to engage new supporters and members of the community. Interested individuals can tour the Clubhouse and sign up to be on the Advisory board to contribute ideas; they can connect employers to DUC to be part of the Transitional Employment Program or sign up to be an expert speaker at a Clubhouse event.  

Jacob hopes to expand the conversation around Dreams Unlimited Clubhouse. “We are looking to educate people on Clubhouse and what psychosocial rehabilitation is, as well as increasing the number of people that we serve. We would love to have you here, no matter who you are!” 

To learn more about Dreams Unlimited Clubhouse and see how to get involved, visit the Easterseals MORC website. Thank you to Jake Warsaw, Lyndsey Shelby, and Heidi Vanderbeek at Easterseals MORC for their contributions to this blog post.