What Disability Pride Means to Self-Advocates
UPDATE: Originally, the cover photo of this blog post was the disability pride flag with zig zag stripes; however, Erin Castillo (also known as @AffirmationsAndAccessibility on Instagram was kind enough to tell me that one of her followers wanted her to let me know that the disability pride flag with zig zag stripes is the old flag and that there is a new flag. I thanked Erin and I am very thankful to her follower for educating me about this matter since I did not know that the flag was updated. Then, I decided to conduct research about the appearance of the updated disability pride flag and the purpose for its change. The zig zags on the original disability pride flag represented a lightning bolt to symbolize the barriers that the disability community navigates, their creativity when it comes to handling these situations, and their breakthroughs. According to input from many individuals in the disability community, however, the lightning bolt design and bright color shades caused a strobe/flicker effect when viewed on electronic devices. Strobe/flicker effects can trigger seizures, migraines, eye strain, disorientation, and even sensory overload. So, the updated disability pride flag was created in with diagonal straight stripes of the same colors with softened shades in 2021 for accessibility purposes. After my research, I edited the cover photo of this blog post for the purpose of accessibility on social media as a disability advocate who is passionate about this concern. The rest of the disability community and I thank you for your understanding💕
To learn more about the history, meaning, and importance of the disability pride flag and its update, click on the link below:
This Wednesday reached the end of Disability Pride Month for this year and disability pride matters all year round. So, I reached out to individuals in the disability community for their perspectives about what disability pride means to them. While there are absolutely many challenges as part of disabilities, the positive parts of the lives of individuals in the disability community tend to be taboo. While disabilities are not an easy road, contrary to popular belief, disabilities are not a "bad" thing. There are many wonderful parts of the lives of individuals in the disability community, especially disability pride. Some participants chose to keep their name anonymous to protect their identities while other people chose to be more open about their identities. In addition, participants were encouraged to share their specific disabilities along with other demographic information for the purpose of intersectionality.
1. "Disability pride is a celebration of all the symptoms, experiences, and emotions that exist within the disability community. Conveying disability pride is a way for disabled individuals to express pride in their identities, break health-related stigmas, and educate others about various illnesses/conditions. It's a matter of accepting oneself, both for the things that you can do and those that you cannot and showing gratitude for the bodies and abilities that you've been given." - Taylor, female with gastroparesis and PTSD in Pennsylvania, United States
2. "Disability pride to me means making sure everyone feels included no matter what their abilities are. Whether you just say a simple hello or make a lifelong friendship with them, it will make their day! Whether someone has a disability or not, we are all unique in our own ways and they all should be celebrated." - Jess, female in the disability community in Pennsylvania, United States
3. "Despite my challenges, I maintain a very positive attitude and mentally function at a tolerable level. Things could be much worse and while my level of neuropathy is very painful at times, it is tolerable." - Anonymous male senior citizen with a disability in Pennsylvania, United States
4. "This used to be hard for me because I struggled with other people's perceptions. In the history of my generation, people with disabilities were not included much and were targets of bullying. Disabilities were considered bad behavior and shamed. Maria Montessori originally created Montessori schools for children with disabilities. Special Education gives people with disabilities the services that they need. I was told that I would never be able to go to college and that I was going to be in Special Education forever, but I was above grade level when I was put in the right place. There were teachers that told me that I wouldn't be able to do certain things that I can do. Disability pride to me is including people with any type of disability whether you know them or not. When people accept disability pride, we are all unique. Disability pride is that we have come so far in the education field that there is more inclusion for people with disabilities. Pride is also acceptance and feeling proud of yourself and how far you have come. No matter how hard things are, just keep challenging yourself to succeed. Pride is that everybody struggles, and a village is needed to help people with disabilities." - Dina Buno (from the documentary film "Dina"), female (she/her/hers) with Autism, ADHD, OCD, PTSD, Generalized Anxiety Disorder (GAD), and Tourette's Syndrome in Pennsylvania, United States
5. "I am very happily on the autism spectrum, a proud stutterer, and take pride in my other disabilities as well. My disabilities have actually helped me in many ways. This is especially true when it comes to my savant skills and being so observant as a person on the autism spectrum and hypervigilance as part of my anxiety. I am so proud of far that I have come over the years. My disability pride has been influenced by my parents for sure. While my parents had concerns about me, they never grieved my disabilities and never treated having a disability or being disabled as something 'bad.' We actually felt relief instead of grief after I was diagnosed because the diagnoses were answers to why I do the things that I do and think the way that I think. My parents just wanted me to get the assistance, support, and provided with the tools that I needed to be the successful person that I am today." - Anonymous female technology, calendric, art, and science savant on the autism spectrum who stutters with ADHD, dyscalculia, Tourette's Syndrome, and symptoms associated with PTSD and Generalized Anxiety Disorder (GAD) in Pennsylvania, United States
6. "To me, disabled pride is all about community. I would not have survived this illness without my spoonie friends. As someone who has been disabled for life, it was always hard fitting in, or simply being understood. My friends have made my experience less terrifying. I've learned how to ask for accessibility, I've learned how to navigate the healthcare system, all thanks to my community. I've also learned what friendship means, what it means to be an active part of a community, and how to put action behind my compassion. Disability pride is celebrating us, how far we come, and pushing us toward where we need to go to achieve better equity for everyone." - Lara, chronically ill female in Colorado, United States
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7. "For me, disability pride is fully accepting every part of myself. Celebrating my accomplishments and recognizing that my disabilities make me who I am and are an important part of my life." - Erin Castillo, white, straight female with Auditory Processing Disorder (APD) and ADHD in California, United States
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8. "To me as a late diagnosed AuDHDer, disability pride means unmasking, it means being authentically myself. Life isn't always easy, sometimes I need help and disability pride is being able to accept that help when it's needed. It's showing the world, especially others like me who might not understand why they feel so different to their peers or have been told they can't succeed, that we are capable, we have value, and we are important members of society. Disability pride is also being so authentically myself that the world has no choice but to be reminded that yes, even people 'like me' can be disabled at the same time as contributing to society, that not all disabilities are visible." - Danica, 25 year old autistic female with ADHD in Canada
9. "I am proud of how I keep getting better at reading and math. I am also proud of surviving cancer, and I was in my high school's mini-THON to help other people with cancer and other survivors. I also love going to the Phillies' Annual Down Syndrome Awareness Night with my family every year because it is fun, and I am unique." - Gerry, female with Down Syndrome, leukemia survivor in Pennsylvania, United States
10. "Disability pride to me means that people who have physical and/or mental limitations that can sometimes be invisible. Unfortunately, judgement is part of the reactions disabled people receive. I've seen it from a young age (1 yr. - 15 yrs.). I grew up with mentally and physically disabled people. It all started at my babysitter's house. She had 5 biological children, 3 adopted, and loads of grandkids. 2 of the 3 adopted were adults with disabilities. Numerous grandkids were disabled as well. My dad transported mentally and physically disabled people to work, school, home, etc. He also transported blind and deaf children to and from school/home. Back in the day, you could bring your kids to work with you no problem. So, I was able to interact with these kids. I saw them as my peers and enjoyed communicating with them. I had just learned the alphabet in ASL. I helped escort the blind kids to and from the vehicle to their destination. My mother and father in-law have invisible physical disabilities (diagnosed 25-40 yrs. ago). I've seen them struggle with outside ridicule. They seem to give these judgmental, ignorant people grace for their quick reactions. They both have wicked senses of humor and try to get through their day with a laugh. I strive to be half as strong as they are." - Anonymous in Ohio, United States
11. "I'm honored to be a person with Down Syndrome and have so many friends with Down Syndrome. The disability community is huge and strong, and we have a voice to make changes in the world." - Sean McElwee, former "Born This Way" reality show male Christian star with Down Syndrome in California, United States
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12. "When I was younger, I went over to my neighbor's house where he had friends over. Little did I know that they were whispering to each other about how they thought I was 'retarded.' The girl who was sitting next to me heard them and informed me of what they said. Since I was so young and did not know what the word 'retarded' meant, I went home to ask my mom. She did not answer me at first; instead, she wanted to know who had called me that.
The events of that day were hurtful for both my mom and I since I am not 'retarded' after all. But, from that moment on, whenever I'm getting dressed, I make sure that I always look good –– that my hair is always combed and not messy, and that buttons on my shirt are buttoned correctly so there is no reason for someone to say anything unkind. Even so, I do not believe that being called a slur should be acceptable in our society. By working to develop good character, we can learn to accept and support one another, even when we may walk, talk, look, or love differently. I even wrote a song about this experience called 'It's Okay to Be You,' which describes my journey with accepting my disability, cerebral palsy, and how it affects my physical coordination and fluency of speech. I also feel comforted by one of my favorite songs: 'Rainbow' by Kasey Musgraves, which I recently played and sang on the piano.
Ever since then, I've been committed to advancing the cause of disability pride at my school, Bucks County Community College in Pennsylvania. For the past two years, I was fortunate to run the school's Disability Pride Club where disabled students and their allies can meet on Zoom to socialize, talk about how their disabilities impact their lives, and become good friends. Most importantly, we were able to honor a former student and Disability Pride Club members of ours named Steven who unexpectedly passed away. One of the things that we did in Steven's honor was host a virtual memorial so that we could all share our many memories of him. While it was a sad day indeed, it gave us the opportunity to develop a strong bond with one another, just as Steven would want.
At Disability Pride Club, we strive to live out Steven's legacy by safely living life to the fullest. Steven was involved in so many other clubs including our school's LGBTQIA+ club to the point where his dad said: 'Steven used to get up at 6am to ride the SEPTA bus to school, and then, he would arrive home at 9pm. I was not even aware of all the great things he did!" I remember attending meetings for the Student Government Association's Diversity and Inclusion Committee that we were both a part of, and Steven played a reserved, yet supportive role. He advocated to fix broken handicap buttons on campus. He wanted to make the college more inclusive and accessible for all. My favorite memory is when he sat with one of our friends at lunch and then helped walk him to class afterward.
As a shy child who stuttered, I did not even imagine that I would befriend Steven or join a Disability Pride Club in college. In elementary school, I was content with walking slowly and standing in the back of the line and elsewhere to follow others around since my disability tightens my leg muscles and impairs my coordination.
To me, disability pride represents the pinnacle of what our society values should be –– empathy, compassion, support, inclusion, belonging, self-advocacy, and most importantly of all, love for one another and the authenticity of who we are. By embracing what makes us unique and different instead of wishing we were just like everyone else, we get to find others who have discovered what makes life most fulfilling –– being part of communities where joy permeates all throughout our relationships and time spent together. When we view the world through this different lens, this is where I think the most meaningful friendships are found." - Christian Huber, person with cerebral palsy who stutters in Pennsylvania, United States
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13. "For me, disability pride means allowing yourself to feel joy and take up space because so much of society views disability as a negative and views disabled people as lazy. Disabled joy means having positive shared experiences and being able to relate to each other. I feel so much happiness when I am with my disabled friends because they know what it's like to be viewed as a bit of a social outcast. Being able to find a community and join together has been one of the best things that I have experienced. Sharing both disabled and autistic joy is so special. I recently made a friend who has the same special interest as me and we have connected on such a special level. It's an entirely new level of joy and I am so happy that I get to experience it! Disability pride is resilience, it's joy, it's speaking up about disability and not being scared to use the word disabled." - Freddie, disabled person who is autistic and has hypermobile Ehler's Danlos Syndrome (EDS) in the United Kingdom
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14. "What disability pride means to me is that it is about finding yourself in an adaptive world where we find our visibility that makes this unique about ourselves. For what personal experiences and for those who equally or close to share the similarities like myself to feel the inclusion from others. Moreover, disability pride also taught me personally about pushing boundaries of going against things that are often spoken as impossible. Growing up in the borderline of Asperger's Syndrome, I used to think that my mind was in a fixation that I wasn't going to amount to much but always had a passion for illustrations of 19 years and as it continues to stand out and break the odds that were against me and the biggest part about that journey is acceptance. And finally, the last part about disability pride is where you can express yourself, battling back against all odds of doubts and uncertainties that stands in your way to become more than what words can't touch the actions." - Dom, male in the Asperger's community in Michigan, United States
15. "Disability pride is essential to educate our public about what having a disability is really like and reduce the stigma associated with disabilities. Whenever I introduce myself to someone and share that I have a twin brother who has Down Syndrome, I still have people ask me what Down Syndrome is, or they tell me 'I'm so sorry about that.'
Sorry about what?
Growing up with Michael was one of the biggest gifts that I was given. My brother has taught me so many beautiful lessons that our world could greatly benefit from.
☀️ Unconditionally loving others, and especially yourself
Something that I adore about Michael is how unconditionally loving he is to those around him.
No matter who approaches him, no matter the color of their skin, who they love, what religion they practice, how they style themselves... as long as they approach Michael with kindness, he will reciprocate that right back. I wonder what our world would look like if more people took on this approach... and it all starts by unconditionally loving ourselves.
☀️ Shifting your perspective
We always have the power to shift our perspectives. I could look back at my life and complain that I grew up with a twin brother who has Down Syndrome...
Or I can look for the beauty and the lessons that I've learned throughout my experience of being around Michael.
It's always up to us to choose what we want to see and experience fully in this world.
☀️☀️☀️
This is why I will continue to advocate for my brother and why I stand for disability pride. So that we can disband the stigma surrounding disabilities." - Julia Toronczak, female with C-PTSD who has a fraternal twin brother with Down Syndrome in California
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16. "Disability pride means having confidence and empowerment. I did not begin my journey with disability with pride. Instead, I wanted to hide in the shadows and wished it would go away. Learning to accept my disability and embracing pride has been a journey for me.
Confidence is one of the biggest parts of disability pride. I need to believe that I can achieve the goals that I set for myself. I also need to have the confidence to be able to ask for accommodations, and support to achieve them. When I was in college, I had to advocate for myself by registering for the office for students with disabilities and using the support that they offered. I also had to speak up for myself by introducing myself to new professors and saying that I had a disability.
Advocacy did not stop when I graduated from school. I work as a paraeducator in a school and must advocate for myself. All the students know or will soon find out that I cannot help them with math. I also must explain this to teachers and administrative staff. Advocating for myself is important because people cannot see my disability. If I do not explain this, people may think that I can do anything and that I'm unmotivated. Advocating never gets easier, but I get better at it each time. I also get to model advocacy for the students I work with at school. Many of my students have disabilities and need to learn to advocate for themselves. I can also help others by sharing my story and information about disabilities on my blog.
Empowerment is another important part of disability pride. I may have things that I cannot do such as driving and math. However, there are many activities that I can do well, such as reading, writing, and photography. When I focus on engaging in the activities that I can do and enjoy, I feel empowered. I may not be able to drive, but I can notice details that others miss and can take pictures of beautiful flowers on my walk. If I was driving a vehicle, I would not be able to see the beauty in front of me and capture it with my camera.
I cannot change having a disability, but I can adjust how I view it. Instead of wanting to hide in shame, I choose to walk forward in pride. Having confidence helps me to go after my goals and dreams. Disability pride does not mean that I don't need help from others. Instead, it gives me the courage to reach out and tell others what I need. I can also find happiness when I choose to engage in activities that bring me joy and I am good at. I am no longer in shame of having a disability. I love the life that I have with a disability and cannot live without it. I also hope to encourage and teach others to walk in pride with having one." - Michelle Steiner, female with dyscalculia in Pennsylvania, United States
Related Link:
- Michelle's Mission - www.mrsmichellesmission.com (Michelle Steiner lives with an invisible disability. She has articles published on The Mighty, Non-Verbal Learning Project, Public Source, Dyscalculia Blog, The Reluctant Spoonie, Kalopina Collective, Imagine the World as one Magazine and Word Gathering. She has had her photographs featured in Word Gathering and Independent and Work Ready. She works as a paraeducator in a school with students with disabilities. She lives in Pennsylvania with her husband and two cats. You can find her at her blog Michelle's Mission.)
17. "When asked what disability awareness means to me it means the only little girl in a wheelchair amongst an entire grade school would have grown up feeling less different. The same girl who was raised on Forrest Gump and Nemo as her role models and now it's for the woman who scrolls through social media sees very few women like her circulating through the media. Disability awareness is crucial for all people with disabilities to finally receive the awareness and representation they deserve. In a time where it is so accessible (especially with the use of social media) to speak out, please use your voice to speak out about the disabled community. Even if it is being cognitive of reposting content from some of your favorite disabled creators!!! Not only are you just uplifting a community - it is your fellow peers, elders, neighbors, and children. I urge you to use your voice. Even if your message reaches one person consider it a success! I am a firm believer in the butterfly effect and know that every post created, conversation had, essay written, and comment made creates more awareness and helps raise up the voices of our disabled community.
I was born missing my fibula, ankle and last two toes on my right leg and have had over 30 surgeries (most of which before age 12)! Being a woman with a disability has been a journey of navigating through both my identity as a person with a disability. Oftentimes the line between 'normal girl' and 'disabled girl' were made apparent. However, I need the world to know that two things can be true at once. I am both normal and disabled because having 3 toes and a leg full of scars has always been normal to me. Wearing a MAFO leg brace every day is normal to me. If I woke up tomorrow and put both shoes on right as I left the house, I would miss that small step to admire my leg, my journey, and the pain in my butt it takes to put on my right shoe." - Gianna Vona, 21 year old woman with fibular hemimelia (FH) in Pennsylvania, United States
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18. "Disability pride means accepting my limitations. Raising awareness of my disability. Perhaps most importantly self-advocate." - Anonymous woman with PTSD in New Jersey, United States
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