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.

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.

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.

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.  

Editor’s Note: This blog contains detailed descriptions of medical trauma and abuse. Please take care when reading.

By Dom Evans

The medical establishment was not designed with disabled people in mind. Especially not those with disabled bodies.

I’ve known this since I was a small child. My first harmful medical experience was at maybe four or five.

When I was two, doctors discovered I was born without a left hip socket. They had to form one, so I was put in various braces until the socket formed about a year later.

Dom as a child and his grandfather.

After the braces came off, I had muscle weakness.. They did not understand why. So, I went through every test possible. It was a painful couple years before they discovered I had Spinal Muscular Atrophy (SMA). My orthopedic surgeon was involved in this surgery and it was after I was recovering where problems first started.

I was four and a half at the time, and had recently had a muscle biopsy on my right leg, which produced a horizontal scar. Inquisitively, I asked my surgeon when I would be able to run and jump, since I couldn’t. I also asked him when my scar would go away.

Callously, he looked at me and said, “Never! You’ll never be normal or run or jump. Get used to it.” He then walked off. I immediately started crying hysterically.

For me, being disabled means going to multiple doctors multiple times throughout the year. 

Especially when I was younger, there were lots of tests, checkups, and general wellness meetings.

Back then, it would depend on the doctor whether I received good care or whether they listened to me or not. I’d find good doctors that actually cared about my health and stick with them for years.

Even worse though was the unexpectedness of an emergency stay where I could never predict what kind of care I would get. That was where I received the bulk of the abuse from the medical establishment when I was younger.

All of that changed when I came out as trans. I was 21, and had no idea what I was in for when it came to dealing with medical professionals as both a wheelchair-using disabled person and a trans person. After coming out as trans, finding medical care became even harder.

Note: I’m also neurologically diverse with ADHD, PTSD, and anxiety. I believe I didn’t receive my ADHD diagnosis until I was 39 due to medical professionals again neglecting very clear signs. They were too focused on my physical disability to notice or care.

My trans medical needs were hampered by my disability. I was experiencing quite a bit of dysphoria, and hormones along with a breast reduction (I was not able to get complete top surgery – it was not available to me) would help to all but obliterate most of my body dysphoria. Unfortunately, it would take me SEVEN years to gain access to hormones due to inaccessibility.

My transition was delayed by almost a decade due to medical ableism.

This was back in the early 2000s, and I lived in a Michigan county where there was not a single doctor that would provide hormone care or access to top surgery. I could go to the closest large city, but it was in a different county and I could not get any accessible transport to take me out of my county. I had to wait until I moved to a different state (we rented a wheelchair accessible van which was ridiculously expensive to rent) where there was a doctor in my county who prescribed me hormones.

What’s even worse is that being trans and disabled has almost gotten me killed more than once. The most egregious instance was when I had my hysterectomy, around 2012. That was such a horrible experience that I’ve been diagnosed with PTSD as a result of what happened at the hospital.

My hysterectomy had to happen. I was having intense bleeding that never stopped. Literally. I would bleed 365 days of the year, 24/7.

My doctors could not find out what was wrong because I could not get on a table to be examined. So, eventually they just put me on birth control. It stopped the bleeding but whenever it was time for my period I would have horrible cramping that left me doubled over in my wheelchair for hours.

When I was on testosterone, it did not help this pain. So I ended up getting my hysterectomy. However, because I could not get on the table to be examined before surgery, they did not know I had an enlarged uterus. When they were taking my uterus out it ripped open at least one of the blood vessels that had been sealed and I was bleeding internally without anybody knowing.

After being released home and a lot of medical gaslighting, it took a month for them to figure out I was slowly bleeding to death internally. After a night where it looked like I had been murdered when I bled all over my bed, I was rushed to the hospital where a nurse demanded I give her my ID. She wanted me to prove I was not a “female” because she was misgendering me.

Here I am, going in and out of consciousness, bleeding out, trying not to die with paramedics begging this nurse to get the doctor and get me a blood transfusion. Instead of doing all that, she “put me in a diaper to stop the flow of blood coming out of me” and told me once I got the ID she would get the doctor.

Luckily, eventually a doctor came in and got me a blood transfusion but for a while I thought I was dying as the blood continued to pour out of me. The transphobia of that nurse still makes me question anytime I feel sweaty, thinking I might’ve started bleeding again and might be dying again. It’s been a decade and it still affects me that deeply.

The truth is, when you are trans and disabled, you have to work even harder to prove you are a human being when you are receiving medical care. You have to prove to the doctors and nurses time and time again that you deserve to receive treatment.

I hope, as pride month continues, medical professionals become more aware of the intersection of disability and gender identity. Trans disabled people deserve to stay alive. We deserve healthcare that helps and affirms us. It’s the least the medical establishment could do for us as human beings.

Dom Evans is the founder of FilmDis, a media monitoring organization that studies and reports on disability representation in the media. He is a Hollywood consultant, television aficionado, and future showrunner. His knowledge and interest on disability extends through media, entertainment, healthcare, gaming and nerdy topics, marriage equality, sex and sexuality, parenting, education, and more. He was also featured in Season 1 of Everything You Know About Disability is Wrong, an Easterseals podcast.