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.

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. 

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.

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.