MDA Guest Ambassador: Ten Tips for High School Life with a Disability

Madison is from Baton Rouge, Louisiana, and lives with congenital muscular dystrophy. She is an upcoming senior at St. Joseph Academy. She has been a dancer since she was 3 years old and has a passion for using her voice to advocate for the neuromuscular disease community.

High school can be challenging but being a high school student living with muscular dystrophy can be even more challenging. Unfortunately, there is no book or guide on how to navigate through such a tough time for someone living with a disability. That’s why I am here, typing this, hoping to share some positive insight on how I managed to stay afloat in the most uncertain time of my life.

Spending the day volunteering at my brother Clyde’s football camp—a reminder of how far we’ve both come.

Let’s begin with understanding that having a disability while in high school does not change your value or worth. We, as teenagers, deserve the same exciting, memorable, unforgettable, four years of high school as a teenager without a disability. I’d like to present my first tip with high priority.

1. Always speak up for yourself

If you don’t remember anything from this blog post, remember to speak up for yourself, even when it feels uncomfortable or scary. If you find yourself struggling to get better seating, accessibility accommodations, an adjusted classwork load, or anything else that you need: do not be afraid to use your voice and say something. There is nothing wrong with understanding and embracing that you need some changes. I used this tip when I realized that my books were too heavy, causing back pain. I spoke to someone at the school administration office and had adjustments made.  I first communicated with my teachers about my disability and my concerns about how trying to carry heavy books was challenging and could negatively impact my muscles in the long term. The solution we found was for me to leave my heavy textbooks in class and use the online versions for studying at home.

2. Rest is best

Take rest days seriously. Do not let other students around you who are doing more sports or physical activity than you damage your positive mindset. There will never be anything wrong with needing rest. Rest is not a sign of weakness or laziness; it is simply the  way to recharge and keep going. I take dance class in school; whenever I feel my body starting to slow down and fight against me, I know that I need to take a seat and give my body a chance to recharge.

3. Find your adult advocate

Find at least one trusted adult at school. High school is the first place you truly learn independence; you are officially away from your guardians at home. Therefore, you need to have someone you can have in your corner, who understands what you are going through so when things get hard, you know there is someone who can be there. I have gone through many depressing seasons due to my disability. This could sometimes affect the way I performed in school. Having people like my counselor and student deans, I was able to understand that I am truly never alone in such a big place and time as high school.

4. Stay organized

Keep track of your appointments and daily life schedule. Whether you use Time Tree, sticky notes, planners, or (my favorite) Google Classroom, staying organized helps you stay afloat and not get overwhelmed when things pop up unexpectedly.

Homecoming. One night, no worries—just music, friends, and being a teen.

5. Trust your own intelligence

Remember that having a disability does not define your intelligence. Never let anyone make you feel as though you are unable to keep up, just do things the way that works best for you to ensure you can succeed.

6. Don’t let others bring you down

It is important to understand that not everyone will understand you or your disability. Unfortunately, we live in a world where not everyone is the nicest to others. That does not mean we let them turn our own hearts ugly. I utilize this tip often, specifically when participating in physical activities. Many of my peers make “joking” comments saying that I am faking it or lying about how much pain I am in. While these comments may be hurtful, I have learned to stay true to the good person I am. Others and their comments mean nothing – the only thing that should matter is what you think of yourself.

7. Love your life

Enjoy the life you were blessed with. I know having a disability can often feel like a curse rather than a blessing, but you should remember that you have a purpose and you matter to this world. You are more deserving than you will ever believe and it is your job to maintain this mindset. Do not be afraid to romanticize the life you have, you only get one.

8. Ask for help

Always ask for help when you need it. Asking for help does not mean you are weak, it is mature. You are allowed to receive support. I spent much of my high school experience wishing I had asked for help earlier, do not make the same mistake as me.

9. It’s okay not to be okay

Learn how to be okay with bad days. We often see the people around us living a “perfect” life and get discouraged. But please know that no one is ever actually living a “perfect” life, they just learn how to manage their days, and you need to do the same. Give yourself grace and never force yourself to be the “strong” one 24/7.

10. Embrace who you are

    

    Saturday night lights with friends, holding on to the happiness & fun of it all.

Be proud of what makes you different. Learn to embrace your wheelchair, braces, your story. Once I recovered from scoliosis surgery, I decided on a roller backpack. I customized it and added my own spin on the plain purple backpack. I was embarrassed at first,  until all my friends hyped me up and gave me encouraging words, which is why it is so important to find people who see you and embrace you for the person you are. To be truly open to finding those people and your own community, you have to embrace yourself first. And remember, you are amazing.