I became involved with YO! to gain experience in a field that I will always enjoy, disability rights advocacy.
What did you gain from being a part of YO?
I have gained experience and friends in an open-minded environment that has helped lead me to my current paid work experience with the state.
Would you do it again if you could? Why?
Yes, and in fact, I like to think that I am still doing YO! volunteering in an informal way, such as speaking with schools on disability issues or recruiting potential new members. No matter how busy I am with my paid work, I will always make time for the things I am passionate about. A friend told me that once I am a volunteer here, I am always a volunteer here.
Would you refer or recommend a youth to be a part of YO?
Yes, and I look forward to seeing what a friend of my family has to offer YO! once she is at the age when she can begin volunteering.
What was the best part of being a YO! Volunteer or a YO! YAC Member?
The best part was the people whom I got to work alongside with. I still stay in touch with many friends I have made along the way, and connect to new and old volunteers whom I may not have even met in person.
How would you describe YO! to a friend?
I describe YO! as being a program that offers young disabled adults/teens a career-like setting where they can discuss a number of topics on disability advocacy. They can also develop workplace skills in a safe environment, such as making phone calls, tabling events, and professional journaling.
What have you accomplished since you completed your YO! Volunteer time or time on the YAC?
Since completing my time on the YAC, I have put my focus to getting my first state job. I have landed an office position job in the Workers Compensation office at the Sonoma Developmental Center.
I originally got involved with YO! because I heard about how fun it was and how it was a way to connect with other youth with disabilities in the community.
What did you gain from being a part of YO!?
From being a part of YO!, I gained leadership skills and learned how to be autonomous. I learned to make sure timesheets were done on time, attended conference calls when needed and stayed up to date with tasks.
Would you do it again if you could? Why?
Yes, I would. I really like the way YO! encourages people with disabilities to work hard at the projects they are given in their ILCs and at YO!. The calls would help us understand what we need to work on in our ILCs – not everyone in their ILC works on the same things so it was interesting to share stories this way.
Would you refer or recommend a youth to YO!?
What was the best part of being a YO! Volunteer or YAC member?
The best part of being a YO! Volunteer was definitely being part of a community/team and also having a flexible remote schedule. I think it can be tough if you are not local since you miss out on social interaction and the daily office life. I did get to see the new YO! office last year so it was a great way to bring back memories.
How would you describe YO! to a friend?
YO! is a great place where you will meet people close to your age who have disabilities. Usually there are opportunities where you can work together at booths for resource fairs and discuss current events such as at conferences or on telephone calls. YO! is about teamwork, but there will be chances for working independently to boost confidence.
What have you accomplished since you completed your Volunteer time with YO! or time on the YAC?
Since I have completed my volunteer time with YO!, I have become more used to being autonomous (trying my best to get things done independently). I have become more confident as a person since I am generally shy, and also have become more diligent about deadlines.
At Grizzly Creek Ranch (GCR) in Portola, CA we had a statewide summit for Disability Pride and Leadership. The purpose of the summit was to bring together youth with disabilities from across California to start making a campaign for Disability Pride Month in July.
When we arrived at the camp, we met people who lived throughout the state, from L.A. to Oakland. We received a t-shirt, name tag, backpack, and a workbook that had the program and agenda for the weekend.
Accessible Outdoor Adventures
The campgrounds were accessible to everyone with all types of disabilities. There were paved pathways to all of the buildings on the property, and the bathrooms and showers were wheelchair accessible. At the summit, we participated in a variety of activities. The one activity that everyone was excited for was the zip line.
The staff at GCR recently made the zip line accessible for everyone to use. The zip line was one of several activities we participated in on the ropes course. For the ropes course, we were split into our cabin groups. The first thing that we did was get our helmets to use on the zip line.
Our group then went over to the Matrix, a grid on the ground with blue tiles. We took turns stepping on the tiles one-by-one, trying to figure out the pattern of the Matrix. If someone stepped on the wrong tile, they “fell into the Matrix” and it was someone else’s turn to go. Once we figured out the pattern, we had to work together to make sure everyone got through the Matrix. Eventually, our whole team made it through the maze!
After we finished up the Matrix, we grabbed our stuff and headed up the hill to the zip line. We wore our helmets and the GCR workers helped us put on a two-part harness. Once we had the harness on, we sat in a purple pouch like seat that was hooked onto the zip line. Only one person was able to do the zip line at a time. When everything was ready, the workers would pull you up to the top of the zip line and give commands. They then would release you, letting you fly through the air! The GCR staff made sure that everyone was able to participate and felt comfortable.
At the end of the day, we had the choice to have s’mores at the campfire or watch a movie. Even though it was cold outside, almost everyone went to the campfire because we had to wait an hour for the movie to download. Once the movie was ready, some campers chose to go inside to watch it. The movie was called Bottom Dollars. It taught us about sheltered workshops, and that those of us who work in one can legally be paid subminimum wages.
Each day we would meet in the lodge and discuss how to start the Disability Pride Campaign. Our discussions included what it means to be disabled and what the word intersectional means. In our group we all had a variety of intersections and disabilities.
“How do you feel about ableism?”
One of the lessons had a diverse panel of people that sat in front of us and answered questions. One of the questions that was asked was “How do you feel about ableism?” Another question that was asked was “Have you ever been made to feel ashamed because of your disability?” Everyone at the camp answered this question, and we all had our hands raised. Looking around the room and seeing that everyone was raising their hand, we both felt a little relief. We also felt connected, knowing that we were not the only ones with these feelings.
We then started creating our Disability Pride Campaign. For this activity, we were placed into five randomly picked groups. This allowed us to work with different people on the campaign and have a variety of perspectives. Each group worked together to develop a Disability Pride Month campaign. We then shared our campaign ideas with the whole group.
This Leadership Summit focused on uniting people with all different types of disabilities to know that we aren’t alone. We need to stand up for ourselves and our community. Having a disability isn’t a bad or negative thing. After being at this Leadership Summit, we both learned a lot about team building. Just because someone might be different in some type of way doesn’t mean that they can’t be a key person in your group.
We were able to connect to a lot of people at the Summit and are excited to continue our Disability Pride Campaign. As we chanted at the camp, “We’re here! We’re loud! We’re disabled and proud!”
An internship is an official program offered by an employer to potential employees. Interns work, sometimes without pay, either part time or full time at a company for a certain period of time.
By Kaitlyn (Katy) Brennan
To my friends and family, I am affectionately known as a “workaholic.” Checking my email more than my texts, working hours upon hours a week, and even bringing my computer on winter break, I have definitely earned this title. The difference between my work and many other workaholic’s though, is that my work is advocacy. The reason I work so hard is that there is always more work to be done.
Becoming ill so young, I never expected to be where I am today. At the time of my diagnosis, I expected to progressively deteriorate and never really live up to my full potential. While what I considered my “full potential” to be has definitely shifted, it feels much more attainable now.
The summer between my freshman and sophomore year, I published an article to The Mighty. An act of throwing caution to the wind quickly turned into a habit as I have now published over 80 articles. While this writing was originally for me — for my sanity — it quickly turned into an act of resistance and advocacy that I hoped would empower others.
The next “step” in my advocacy came that same summer when I began to intern for a local political campaign. Making calls, walking doors, and promoting this congressman gave me a new angle to my advocacy: legislation. I became addicted to working for congressmen and politicians that I believe in, and I have not stepped out of the world of politics since.
The next year was a complete whirlwind for me. I gained two new diagnoses, lost my grandfather, and definitely lost my direction a few times along the way. Yet, my constant was always my advocacy. I continued to write, speak, and make visual content for anyone who would read or listen to my story. Eventually, I ended up working for two organizations, Suffering the Silence and Sayfty, publishing their social media content and promoting their platforms.
Since then, my passion for advocacy has continued to grow, and so have my internships. Never once has an internship been for the resume or for my personal gain, my goal has always been to help others. I realize that my pain and fatigue will never truly go away, but that does not mean that it has to be a negative force in my life. My chronic illnesses have become a motivator in how I live my life. I write to help others. I intern to help others. I live to help others.
So, yes, I do accept this title of workaholic, but I do not consider this to be a bad thing. My work will always be for the advancement of society as a whole, and I will always be proud to identify as a writer, a speaker, and an advocate.
Advocacy takes work and time. Walking doors, writing as much as I can, and furthering my voice will always drain me. I cannot count on my hands how many times I have wanted to give up and just wallow in my illness, but it always come back to my internships. They both drain me and motivate me. Ultimately, they aim to help everyone around me and that will always be the driving factor in why I intern.
Kaitlyn (Katy) Brennan is a high school student diagnosed with Ehlers-Danlos Syndrome and associated conditions. Despite becoming sick so young, she has made it her mission to advocate for others in her position and to spread as much awareness as possible through writing and speaking. You can find her other work on The Mighty, Al Jazeera, The Odyssey, and more.
When I was six the world began to spin. At first it only happened for short amounts of time, 20 minutes, maybe an hour. I had trouble describing the spinning. It wasn’t quite like I was spinning and it wasn’t quite like the world was spinning. The best explanation I could come up with was that my brain was spinning around inside my head, and as nonsensical as that seems, it wasn’t the strangest part. The strangest part was that it only happened when I was standing. As long as I was laying down or sitting up I was fine, but the minute I stood up everything went wrong.
My parents took me to the pediatrician. The pediatrician determined that I didn’t have a fever. The pediatrician determined that I didn’t have a rash. The pediatrician determined that I wasn’t throwing up. The pediatrician decided that I was fine. She asked me to stand up and I started crying because of the way the world spun. She told me that I was anticipating the spinning, that I was only crying because I thought there would be discomfort, not because there actually was. She told my mother that I was lying, that if my mother, who had carried me in because of my discomfort, left me sitting in the waiting room I would get up and follow her out and stop pretending something was wrong.
Here’s what the pediatrician didn’t do. She didn’t consider that I might be telling the truth. If she had done a basic examination, if she had checked my heart rate and blood pressure, she would have noticed that my heart rate while laying down was at least 30 beats per minute slower than it was sitting up or standing. She might not have known what it meant, but she would have known enough to recommend that I see a cardiologist.
Photo Description: A young person wearing a hat smilling at the camera. In the background are several large trees.
SJ is a Junior and an English Major at Mount Holyoke College. She also does work for Mount Holyoke’s Accessibility Services department, Co-Chair’s MHC’s Jewish Student Union, and is the Social Chair of the College’s Coalition For Asexual/Aromantic Awareness.
Over the years I stopped going to doctors when I was sick. I still saw doctors, but I only went to appointments I was healthy. There was no point in going when I was sick. They exacerbated my pain and discomfort and for what? The doctors couldn’t magically fix me. They didn’t even know what was wrong. All they could do was try new medications that would take weeks to build to an effective dosage, if they worked at all, and write me another round of doctors’ notes for school, and shake their heads at my mother for humoring me by letting me stay home so often. My chronic migraines emerged about two years after the dizziness did, and every doctor was quick to tell me that the vertigo was just a side effect of the migraines, yet somehow, I didn’t think it was. I couldn’t fully explain how I knew, but it just felt different somehow. One thing they had in common though, they both got worse with every year that passed, hours turned into a day and then into multiple days and days turned into a week. By middle school there were times when I would go two whole weeks without attending school or seeing my friends or getting out of bed. Needless to say my grades suffered for it, and both my teachers and the administration accused me of faking. My freshman year of high school I missed so much that only got a singular credit and had to retake most of my classes.
The summer before my sophomore year of college I was visiting my neurologist two to three times a week. That neurologist, my seventh since first grade, was trying a new, experimental, migraine treatment that involved me coming in so that she could administer a dose so even when I was feeling dizzy and crummy I went in for treatment. Since an examination was standard procedure at the beginning of my appointments a nurse came in to take my heart rate and blood pressure. At first she thought that there was something wrong with the blood pressure cuff. When she repeated the process and found that she got the same results, she asked me if I was feeling okay then ran out of the room. The nurse was no trained specialist, but it didn’t take a trained specialist to realize that something was wrong
A few minutes later my neurologist came in and informed me that I had P.O.T.S, Postural Orthostatic Tachycardia Syndrome, the reason for the debilitating episodic positional vertigo that I had been experiencing since I was six. She sent me to a cardiologist and I got my official diagnosis from him a few months later but the damage had already been done. I had gone undiagnosed for 13 years, 13 years of people doubting that my disability was real, of the school insisting that I was faking it, of being afraid to tell anyone that I was feeling unwell yet again. 13 years in which I failed my freshman year of high school and pushed my body in ways that greatly increased my symptoms, because I didn’t know any better. If my pediatrician had believed me even a little, even enough to do a proper examination and put a blood pressure cuff on my arm, I would have gotten my diagnosis and started trying medications and figuring out how to manage my disability when I was six instead of as a sophomore in college. But that’s not what happened, because the pediatrician didn’t believe me. As difficult as it is for adults to find doctors who believe them and who run the tests that need to be run it’s even harder for children, because it’s so easy to dismiss a child, to say they are just trying to get attention, that they’re exaggerating, that they’re faking it. But adults don’t have a monopoly on the chronic illness market and it’s worth considering that if a child says that something’s wrong, then maybe, just maybe, they are telling the truth.
Photo description: A group of seven youth with various types of disabilities/gender/racial and ethnic identities smiling and posing for a photo.
The Dayle McIntosh Center (DMC) in Anaheim has recently partnered with the City of Anaheim and received a program grant from the Department of Rehabilitation to serve youth.
DMC is passionate about working with youth and has a firm commitment to ensure the successful continuation of the Independent Living Movement through future generations. DMC is also committed to having youth-driven programming, which has been a crucial key to its success. “Nobody gets youth better than youth!”
The MY Best (Mentoring Youth By Enhancing Successful Transition) program has recently experienced some “successful transitions” of its own. MY BEST has expanded from two monthly activities to programming on every Saturday. Saturday programs include:
Live Out Loud (LOL) Youth Peer Day, a social/recreation activity on the 1st Saturday
An Independent Living Skills (ILS) class for deaf youth on the 2nd Saturday,
A Cross-Disability ILS class on the 3rd Saturday
A peer group and improvisational theater activity on the 4th Saturday (started in February)
Collaboration with other entities involved with youth programming has greatly boosted effectiveness of DMC’s youth program. The City of Anaheim, local school districts and transitional programs, Regional Center and the Department of Rehabilitation have all provided referrals and support.
Anaheim has made it possible for MY BEST to move into donated space that includes kitchen facilities and an outdoor area. Outreach in the community, especially sharing flyers with Regional Center, has created a huge influx of new youth consumers.
A Youth Advisory Committee (YAC) was formed in October of 2017 to ensure that programs are truly youth driven. The YAC is composed of five youth with various disabilities who have either been long–time members of the youth program or have shown great insight and leadership potential. The Youth Advisors meet with DMC Staff on a monthly basis to provide constructive feedback and suggestions.
Through the advice of the YAC, arts and crafts were added to the LOL format, new ideas have been recommended for lesson planning, and a youth advisor and youth outreach coordinator co-facilitate the Youth Peer Support group.
Advice for other Independent Living Centers seeking to bolster youth involvement:
Think outside the box. Look at your community and partners you currently work with to see how the resources and relationships can support your youth program.
If your center doesn’t have the space for a youth group, approach a local city to see if you can use their community center or a local church that may let you use their space.
Assess your community to see what other agencies you might build partnerships with that might add great valueand support to your programming.
Find youth who want to give input. They will give you honest feedback about whether or not things are working. If their voices are heard, they will come back and bring friends!
I started volunteering with YO! shortly after I attended the California Youth Leadership Forum for students with disabilities in 2010. After spending a week with the community, I knew I wanted to become more involved within the world of leadership, advocacy and take action. I gained so many tools and resources while at YLF and I wanted to find a way to share that knowledge and apply it in my life. Initially I started out working on the Disability History Week campaign which had just celebrated the passing of the resolution to have disability history taught in schools k-12, and I was excited to get started on a new project!
What did you gain from being a part of YO?
During my three years with YO!, I gained confidence, leadership skills and a professional network that I still rely on today. As a 16 year old volunteer, it was amazing to have an organization and group of leaders who were giving young people an opportunity to have their voices heard. I gained the confidence to speak out for what I believe in and take pride in educating people about disability culture and community. I also grew as a leader when working with other fantastic youth from across California. We shared our strengths and knowledge to do the best work we could. I also had the opportunity to attend different conferences, speak at schools and network with many different professionals which I still keep in touch with today.
Would you do it again if you could? Why?
I really enjoyed my time volunteering and working with YO! Some of my greatest friendships grew out of being a YO! member and I would absolutely do it again if possible.
Would you refer or recommend a youth to be a part of YO?
Over the years of my involvement with youth, I have recommended they become involved with YO! in whatever capacity they felt comfortable in. I think experiencing any opportunity such as YO! would be great for young people.
What was the best part of being a YO! Volunteer or time on the YAC?
The best part of being a YO! volunteer was being able to meet and work alongside leaders in the disability community. It was because of my involvement with YO! and the disability community that I was able to travel to Washington D.C. and meet even more amazing leaders who are also fighting our fight.
How would you describe YO! to a friend?
I would describe YO! as a community of young thought leaders who are the next generation of positive action. It’s a safe space where you can learn from others and feel proud of who you are in all your identities.
What have you accomplished since you completed your Volunteer or time on the YAC?
Since I was a YO! volunteer, I have continued my involvement with YLF, did an internship in Washington D.C. and in 2015 I graduated with my Bachelors of Arts in Sociology and Ethnic Studies from University of California of San Diego. I currently work for the San Diego County Office of Education as an instructional aide working with students who are visually impaired. My long term goal is to go back to school and get my Ph.D!
YO presented the opportunity to develop leadership and professional skills.
2. What did you gain from being a part of YO?
It helped me develop professional and leadership skill. It taught me what it meant to be an advocate and what it takes to make a difference. Through YO, I also gained a deeper understanding of what it is to be a person with a disability, which helped me proudly identify as one.
3. Would you do it again if you could? Why?
With no hesitation, I will do it again! YO! offers so much, I didn’t get a chance to experience all of it.
4. Would you refer or recommend a youth to YO!?
I highly recommended YO to all youth who want to learn more about disability culture, and for those want to make a positive change in the way society treats and views people with disabilities.
5. What was the best part of being a YO! Volunteer or YAC member?
Making friends and learning from each other. The Stipend was nice too. LoL
6. How would you describe YO! to a friend?
YO! will open your eyes to a world few people know very little about. It will help you develop the skills required to make a change in your community!
7. What have you accomplished since you completed your Volunteer with time YO! or time on the YAC?
I have transferred to the University of California Irvine, from where I will be graduating with my BS in Neuroscience. I have applied to Ph.D programs and I am currently interviewing.
I’ve always been fascinated with history; I enjoy learning from the past as well as from other people’s experiences. Growing up with Cerebral Palsy, disability history has always held a particular importance to me. Ed Roberts, Justin Dart, and Judy Heumann have always been my role models. Naturally, when the opportunity to be a part of a film about disability history came up, I was thrilled. I learned that as part of this opportunity, we would be watching a documentary called Crip Camp. Crip Camp is about a summer camp for disabled youth that took place in 1971. Because of my interest in history, I couldn’t wait to see how the youth in the documentary viewed disability and ableism.
After we watched the documentary, our group had the opportunity to talk with Judy Heumann and Jim LeBrecht about our individual reactions to the footage we had just seen. It was a great experience to hear that other people had similar challenges, this provided a good sense of community. After watching the clip, I couldn’t help but think that it could have been filmed yesterday. The only major difference is that the documentary was shot in black and white rather than color. Despite the forty-six year difference, I really felt a connection to the youth that were portrayed in 1971. The issues they were expressing then of wanting to excel in life and be productive regardless of their disabilities are things that I deal with every day.
I view my disability as a positive and that, I believe, is the most important impact Judy has had on me. Ableism is viewing disability as a problem to be overcome. I believe that the key to defeating ableism is to instead view disability as a natural part of what it means to be human. Crip Camp has the potential to become much more than a film. I think it can help start a wider discussion that can change the view of disability into something to be celebrated rather than something to be overcome. Too many documentaries portray people with disabilities as heroic and inspiring rather than regular human beings. While every person has their own unique challenges, we as a community have far more to offer the world than just inspiration. Crip Camp shows the viewer how the disability community, and the individuals in it, view ourselves rather than how people without disabilities view us. I believe this is key for future generations, both disabled and otherwise, to help further inclusion and diversity rather than exclusion. At the end of the day, despite our many differences, we are all human beings; Crip Camp shows us the power of equality.
Blake enjoys history and technology because he believes both are very important to the disability community. When he is not volunteering or working on a project involving disability rights or assistive technology he plays play video games with friends.
For me, bullying has been one of the most painful experiences. Bullying is hard when it comes from friends or acquaintances, but even harder when it is from family members. I cannot describe the amount of pain that bullying has caused me.
I believe that people don’t recognize how much of a negative impact bullying can have on students with disabilities. In my experiences, bullying can affect your self-esteem, your ability to socialize, worsen your anxiety or depression symptoms, and cause isolation.
Bullying can be prevented, and the work YO! does is helping people to recognize that bullying is a major issue faced by youth with disabilities. I have found a few techniques that I use to help me cope with bullying. I will share them below, hopefully they can help you too.
I like to listen to loud music through headphones right after I have been bullied. This helps to block out all the horrible words that were said so I can focus on other things.
When you are being bullied, try to immediately leave the situation. Whether that means leaving the family dinner table, a social gathering, or going home from a friend’s house. I have found it best to immediately distance myself from the bully.
I like to say positive affirmations to myself. Affirmations like “I am goodness”, “I am beauty”, “I am health”, and “I am peace” can do wonders for your self-esteem. Saying it in front of a mirror is very powerful. Some people even write sticky notes with their positive affirmations and place them on their mirror as a reminder.
Speak to your emotional support team right after you have been bullied. Have a conversation and tell them what just happened. If you have been bullied at school, you can also speak to your teacher or other administrators.
Some of these tips may seem silly, but they have worked for me and they may work for you too. Our ability to heal ourselves shouldn’t be underestimated. We are powerful and capable human beings who can access emotional healing. I hope some of my tips above will help you to heal and combat bullying.
Below is a video of other youth with disabilities sharing some words of kindness.