The Importance of Learning to Advocate for Yourself
One of the hardest things I had to learn, and still struggle with sometimes, is how to advocate for myself. If you have a disability, you know that few things work out for you without a fight. Government assistance? Fight. Accessibility in nearly all venues? Fight. Proper medical care/access to healthcare? Fight. General respect for you and your disability? Yeah, a lot of times it’s a fight even for that.
As a child, you learn from your loved ones (hopefully) what it means to advocate.
You watch them tell the other adults what equipment you need and how they have to help you throughout the day. Not barking orders, just educating and making sure you’re given the same chance to thrive in your environment. You watch them not take ‘no’ for an answer. To this day, my mom is ready to start swinging the moment she knows I’m being overlooked, left out, or discriminated against. I have social anxiety, so I’m almost always happy to let her.
To take it into my own hands and fight for myself is an entirely different story. Unfortunately, even with a supportive and loving family, internalized ableism is still a big problem for a lot of disabled people. Myself included.
When I was younger, I didn’t really know how to advocate for myself and most times I didn’t want to.
In elementary school, the rule was always ‘raise your hand’ before speaking. I could raise my hand, but I couldn’t pick my elbow off the desk, so most of the time I’d go unnoticed. My teachers would constantly tell me to raise my hand higher or do something, like yell, to get their attention. I couldn’t raise my hand any higher if I wanted to and doing something different than everyone else to get their attention felt unbearable to me.
Instead of talking to my teachers about it and trying to find a better solution, I opted to not participate. I was embarrassed that I needed extra help or even just a little extra attention. I thought it’d make me look like a teacher’s pet, just begging to be front and center.
When kids made fun of me and played with my wheelchair, I didn’t know how to stop it. I didn’t know how to explain to them that my wheelchair cost more than their parent’s car. I didn’t know how to make them understand that it was like an extension of my body that I couldn’t function without, not a toy for their amusement in between classes. Standing up for myself felt more like attention seeking, but I didn’t want to be a tattletale either.
In high school, when I would get accused of milking my disability to get out of work, I would nervously laugh and change the subject. I didn’t know how to explain how quickly my muscles got tired making it nearly impossible to hold a pen, let alone to fill 3 pages of notes in 45 minutes. Trying to explain why I needed an aide with me in class, not just to walk me across campus and open doors felt overwhelming.
I could advocate on my friends behalf, but I let my teachers make hurtful assumptions, laugh at me, and dismiss my needs.
Each year, I got a little better at it. I hated my school more and more and stopped caring if they liked me. Unfortunately, when I got to college I took a few steps back. I could never speak up and say when things weren’t working for me. I’d never ask for a room to be rearranged to make room for my wheelchair or ask for help when struggling to participate in class. When I had a course on computer simulations and couldn’t reach to turn my monitor on, I’d sit quietly and try to memorize every step the professor showed us. To me, it was easier to just try and do the assignment at home rather than ask for my setup to be adapted so I could follow along and complete it in class like everyone else.
I regret not learning how to advocate for myself in school because I could have had an entirely different experience. I could have struggled much less. More than that, I could have gained valuable skills and been happier.
Self-advocation forces you to learn your strengths and weaknesses so that you understand your needs.
More importantly, it teaches you to communicate those needs to someone else. It might not seem like it, but this is an extremely valuable skill. I never had any problems recognizing where I did and didn’t need assistance. I just could never explain it. I’d get shy and anxious, which made it really hard for me to logically explain how my disability was affecting me in a way that someone else might not understand on their own. So, I didn’t try.
As a disabled adult, I find that you have to be willing to advocate for yourself more often and in much more serious scenarios. If anything were to happen to my mother, I am the only person who can speak up and say what I need to survive. My care is complicated and dealing with state services to get that care is even harder. It’s crucial that kids learn from a young age how to communicate their needs because it’s a skill that they will use their entire life. In some cases, their life could depend on it.
In order to advocate, you need to be ready and willing to fight.
I tend to shy away from anything I perceive as a conflict, so growing up I let adults bully me into silence when I tried to speak up about my disability. Luckily, I was never in any real danger, but for some disabilities that might not always be the case. For some kids, having a teacher dismiss their needs could land them in the hospital or worse. We’re taught to always respect authority figures, listen to what they say and always follow their rules. We need to teach disabled kids to stand up and fight for themselves. We need to teach them that advocating for yourself isn’t being disrespectful.
If I hadn’t always backed down, I could have learned how to stay strong under pressure much faster than I did. Heck, conflict management is a skill you could even throw on a resume. I certainly had plenty of opportunities to practice and I wish that I had.
Had I been my own advocate, I could have been the one to say how to handle a situation rather than let it be decided for me.
I know my body better than anyone else, but I let people who didn’t even understand Muscular Dystrophy call all the shots. It’s no wonder half the time my ‘accommodations’ weren’t all that accommodating. Disabled children and adults struggle to have any autonomy on a regular basis. Our concerns and suggestions aren’t taken seriously. I’ve found that society much prefers to ask our caregivers what we need rather than directly speaking to us.
The fact is that no one understands disability better than a disabled person. We spend every day figuring out how to exist in a world that isn’t really designed to include us. We’re pretty clever. We know what we’re doing most times. We can come up with solutions that abled people might not always think of. I should have trusted my instincts more and fought for more control in decision-making processes.
Taking control and owning your disability gives you independence, builds confidence, and can be incredibly empowering.
Feeling like a burden is pretty common among disabled kids, which is a whole post on its own for another day. A lot of times, it carries through into adulthood. At any age, it’s harmful. It makes people believe they can’t, or shouldn’t, advocate for themselves.
It’s part of the reason I hate the term ‘special needs’; 99% of the time, we’re not asking for anything above and beyond what the law says we are entitled to. We are asking for accessibility, that just comes in a million different forms. Far too often our needs are seen as tedious or extra work (especially in educational settings) so they become ‘special needs.’
That’s why learning that you’re not a burden and deserve accessibility, care, adaptations, etc. changes your world.
You become much more confident, no longer wondering if you should just stay home to make it easier on everyone. You can ask for help without a panic attack because you know there’s no shame in it. Once you are okay with self-advocating, you become more successful and happier in your environment. You know you belong there and you let yourself have the tools you need instead of struggling. You gain independence once you learn how to handle situations by yourself. It’s freeing to no longer rely on a caregiver to speak for you.
Most importantly, it helps you embrace your disability and that’s pretty damn empowering.