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

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 standing outside wearing a guayabera, smiling

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. 

Sebastian in an industrial kitchen, cutting up sausages, wearing a chef hatThrough 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

Celebrating Disability Pride! Swooping pride flag colors. Photo of disabled people hanging out

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.

Jen as a child wearing a birthday hatWhen 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.

Jen wearing a jean jacket standing in a record store

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.

Jen wearing a green jacket 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

Celebrating Disability Pride! Swooping pride flag colors. Photo of disabled people hanging out

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

Grant as a child, driving her red wheelchair outside in the street wearing sunglassesI 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

Grant, using his wheelchair, is smiling next to his girlfriend who leans into him. They are in front of a tree with lights

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

LGBTQ Pride, Celebrate Pride! People holding up various queer pride flags

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?

Rikki, a woman with long, wavy brown hair smiling at the camera and wearing a grey sweater.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 wearing a lanyard and standing in front of the VidCon sign

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.)

Rikki holding up a promotional sign that says Rikki Poynter, YouTuber and Deaf AdvocateWith 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

Easterseals Accessible Transportation

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.

Chaperone assisting older adult using a wheelchair

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

Sarah wearing a plaid shirt standing outside and smiling

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, a woman stands in front of a white board that says "I feel the clubhouse is the only place to meet people and help with your recovery. It is my favorite place to go!

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 stands in front of a whiteboard that reads "I like clubhouse because it expands my social network. Meeting new people and making new friends is a gift. I encourage people to come!

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.  

 

Disabled, Trans, and Denied: Experiences with Problems in Medical Care

LGBTQ Pride, Celebrate Pride! People holding up various queer pride flags

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 young child, wearing a white dress and an arm brace. They are sitting on their dad's lap

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.

Dom sitting in his wheelchair outside, wearing a checked sweaterWhen 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.

 

Bridging Employment Gaps for Veterans and Older Americans: An Interview with SCSEP’s Crystal Odom-McKinney

Crystal sitting in a chair wearing a blue dress suit. There's a boom mic above her.

Crystal at the 2024 Policy and Partnership Forum. Easterseals Photo by Rohanna Mertens

Crystal Odom-McKinney is the National Director for the Easterseals Senior Community Service Employment Program (SCSEP). SCSEP is the largest federally-funded program for low-income, unemployed adults, ages 55 and older, who seek employment and training assistance as well as civic engagement. 

Through this transitional employment program, Easterseals partners with community-based nonprofit organizations and government agencies to provide participants with training opportunities to update their skills. During time in SCSEP, job seekers work with Easterseals staff to target and achieve personal employment goals. Some SCSEP participants are veterans in need of support.

As a veteran, Crystal knows how hard it can be for veterans to transition from military service back into civilian life. Finding employment can be difficult and stressful, and for disabled veterans, or older veterans, these barriers to employment and reintegration can be even more prominent. Easterseals and its Affiliates work hard to provide much needed-support to veterans during and after this period of transition. Crystal takes pride in providing confidence to veterans as they make this next step in their journey. 

This interview has been edited for clarity. (more…)

 

Finding Pride at the Intersection of Disabled and Queer

LGBTQ Pride, Celebrate Pride! People holding up various queer pride flags

By Christina Gann

I have been disabled since birth, both developmentally and physically — the source was a congenital disorder, a hole in my diaphragm, that most likely also led to my neurodivergent brain and my small intestines twisting inside my body. I had emergency surgery to remove all but 11 inches of my small intestines when I was nine years old after an excruciating two years of my resilient mother fighting to convince my doctors that I had a health problem at all. I was invisible to my doctors and so was my illness. 

Raven, with short brown hair, wearing glasses. They have a tie dye shirt with a red boaI spent most of third grade in the hospital after my intestinal resection and when I returned, it was with a new set of hardware — a backpack full of nutritional life support and a Hickman heart catheter. I remember the crushing feeling of having to go to the community pool and having children run up and ask me what was sticking out of my chest. All I wanted was to hide, and I did. I did everything I could to not allow the world to “see” me as disabled or different. 

I came out to my parents as a lesbian, Christmas 2005 sitting at an IHOP after an intoxicated night out with my college friends. I was so terrified I couldn’t even bring myself to face them or call them to break the news gently. I texted my mom, “Hi mom, I need to tell you, I am a lesbian.  If you have any questions, you can call me in the morning.” As funny as it is when I talk about it now, I was riddled with internalized shame of myself, as who I am naturally attracted to was deemed unacceptable and sinful. I grew up in a small town in central Texas where the Bible was the word with no safe space for the queer experience. 

The fear of being rejected by your pack is an instinct that triggers a primal reaction to conform. The moment I sent that text, I remember feeling like a weight had been lifted off my chest so I could finally breathe, and within the same breath, fear consumed me. I was paralyzed with the thought of losing all that I came to know, those that are most important and close to me. I feared being rejected by the very people I was supposed to depend on and look to when I needed support, the people who love me unconditionally. Was this the condition that would break those bonds? I felt raw and exposed. I was no longer hidden, living outside my pack that sheltered and protected me all those years. Unknown to me at the time, but coming out is a revolving door and each time I had to make myself susceptible to the possibility of ridicule and hatred in order to exist authentically. Fear is always sitting at the back of my mind that I would be taken out of the conversation and only my sexuality and gender would exist instead of my character. That I would suddenly be deemed unworthy of personhood based on my sexuality and gender expression alone. 

As I matured into adulthood, I became hyper independent. I wouldn’t ask for help or accommodations and I certainly would not claim the identity of disabled. I was in a battle with my internalized ableism. I learned from societal views early on that accepting your disability meant giving up and limiting the possibilities. In media, literature, and marketing, this was the story that was told over and over again until it became the narrative I gave myself. I had to hide and deny my disability or I would never reach my fullest potential. When it’s the only story being told, it’s hard to see another perspective even if it’s your own. 

Raven at a thrift store wearing a fur jacket, making a silly kissy face at the camera Though I lived much of my adult life as an out and proud lesbian, I struggled to be proud of my disabilities and how they shaped the way I walk through the world. Just like I hid my queerness, and twisted myself into a shape that looked like it might fit so that I might not be found out in my youth. I did the same thing with my disabilities. I fought accepting myself in order to fit the standard I was told was required to lead a peaceful existence. 

My disabilities excluded me from conversations about my life and the possibilities held there.

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 and a life less fulfilling. I grew up in a world that mistreated, misrepresented, and abandoned the disabled and cast a shadow on the queer and gender non-conforming existence. I struggled to unravel the false narrative of society from my own lived experience. 

I spent most of my life hiding pieces of my identity that are interwoven into the fabric of my existence. I was afraid to accept myself for who I am because that meant living a life out in the open, exposed, raw and vulnerable against a society that would rather have me not exist at all. My sexuality, gender expression and disability out in the open meant living outside the boundaries of what society deemed acceptable and that took a whole lot of love to fight the fear if I chose self acceptance over societal expectations. 

I am grateful today to know and understand that I can be proud of who I am every day. My disabilities, sexuality and gender expression do not dictate my capabilities or the possibilities of what I can achieve, but they do shape the way in which I exist. All the parts of myself I was afraid to show are a part of the beautiful tapestry that is me and are worthy of embracing, love and acceptance. I have finally found Pride in it all.

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.

 

 

The Paradox Of Being A Girl: Trans Identity and Autism

LGBTQ Pride, Celebrate Pride! People holding up various queer pride flagsBy Megan Maverick

The girl in the poster looked like me. 

“DEVELOPMENTAL MILESTONES,” screamed the top of the poster, and beside the girl, one of the milestones said, “Plays with gender appropriate toys.” 

In a sense, she looked like the children who walked by her every day, too. 

She hung in the hallway of a school for autistic children. She was made to look like us; that was her purpose. 


Megan, wearing round metal glasses is smiling and hugs their catIn 2002, autism researcher Simon Baron Cohen penned a new theory of autism. According to Baron Cohen, men’s and women’s brains generally specialize in one of two skill sets: empathizing for women and systemizing for men. There’s an exception, though. Autistic people of all genders, allegedly, are extreme systemizers. It’s called the extreme male brain theory. 

It’s not the first time that autism was disassociated from femininity, and it won’t be the last, either. As early as 1944, when Hans Asperger first began to identify autism, he said he initially found it only in boys. To this day, some accounts of sex differences in autism report a 2:1 ratio of autistic men to autistic women. 

I was raised a girl, but I was bad at it. I didn’t shave, I sat with my legs open, and I wore dresses clumsily. When I interned at the DEVELOPMENTAL MILESTONES school, the CEO pulled me aside into a hallway and invited me to her class for autistic girls to learn how to dress and act more femininely.  

Autistic people are more than 7 times more likely to be gender variant. I am one of them. 

(And, while I can’t speak to other experiences today, I can speak to the experiences of autistic people who are raised, willingly or unwillingly, as girls. A 2019 study showed that, of 21 autistic people all raised as girls, not a single one related to the “typical presentation and activities of the female gender.”) 


The route through which I realized I am transgender was a circuitous one. It started with one fact: autistic women are not treated as women. I was an autistic woman; I found that I was not treated as one.  

From this, I played with the pronouns I used. I slowly realized she/her felt less and less genuine. I tried a binder, eventually got surgery to remove my breasts, and briefly experimented with low-dose testosterone gel. And somewhere along this journey — I couldn’t tell you where — I began to identify as agender. 

Megan looking through a peephole at Stonehenge I want to write an essay about growing up disconnected from femininity, the ways in which being autistic means you are alienated from womanhood, the ways it contributed to my current identity. At the same time, I am afraid. Theories like Baron Cohen’s offer a tempting out to explain away my identity, offer a tempting in to further denial of autistic women’s womanhood. I am afraid of my story being used as evidence. 

There’s another theory I want to address: rapid-onset gender dysphoria, or ROGD. Put simply, ROGD poses that trans identity is a kind of social contagion among people raised as girls, one which preys upon the vulnerability of young girls’ relationship to misogyny. In this theory, young women are so turned away from womanhood that they turn to masculinity instead as a kind of shelter from the world. 

Does my story not confirm it? 


Let’s take a break from theory. Pause for a moment. I’m going to ask my cisgender audience a question: 

What does your gender feel like to you? 

If you radically changed your gender presentation, would it still feel comfortable? And if the world decided to call you sir or ma’am, whichever you haven’t used until now, what then? What if your driver’s license said the opposite? What if your birth certificate lied? What if not a single soul called you by your name? 

Is your gender not complex, too?

Autistic people and transgender people alike are rarely given the space to be as messy as non-autistic and non-transgender people alike. Whereas neurotypical cisgender people are given a fuller range of gendered brain possibilities, autistic trans people are given only extremes — or are seen as woefully misled.  

In the study I shared with you earlier, not a single autistic person in the gender study related to the tropes of womanhood. What I failed to mention was the true diversity of the participant’s experiences. Nine identified with aspects of both binary genders or felt fluid, eight felt like tomboys, eight more had identities related to interests or company, seven wanted to be boys growing up, seven identified with neither gender. 

Only one was transgender. 


Megan with a small red bird on their shoulderThe truth is: I think I have a good guess as to why autistic people are more likely to be trans. And the truth is: It doesn’t matter. If autistic people are more likely to be gender-divergent, then what that means is autistic people are more likely to need care. We are more likely to be vulnerable. We are more likely to face harm at the hands of others. 

If I struggled with girlhood and decided it was no longer for me, what then? I fear any search for a cause is eventually a search for a cure. Like autism, the “problem” of trans identity is not one that is fixed by finding a cause and fixing it. Autistic people are clear on this issue; trans people are clear on it as well. Instead, I call for those who love autistic people and trans people — and autistic trans people — to put aside the question of why we are autistic and trans. It is time to move onto the question of how to support us. 

In both cases, the answer is clear: listen to us, hear us, and stand with our demands for agency over our own lives. 

It’s time enough for that. 

Megan Maverick was born and raised in San Diego, California. Early in their life, they dove into autistic and queer identity head-on, working with the Autistic Self Advocacy Network and the National Disability Rights Network to further disability rights. They now work as a proofreader in Kentucky and spend their free time heaping adoration on their cats.