ALS Webinar

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.