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Why Is Disability Self-Advocacy So Hard?

Self-advocacy is essential, vital, crucial, and life-or-death to the disability experience. We have no choice but to advocate for ourselves in all spheres of our lives – be it healthcare, school, work, or the community. And while self-advocacy is so crucial, and every organization has put out resources on it at least once – it is still. so. hard. to. do. And the concept still feels so out of reach to so many people. So – why is self-advocacy so hard? Why does it feel like we’re always talking about self-advocacy but not actually doing it? Let’s figure it out together.

First off – what is self-advocacy? Great question, right? Unfortunately, I don’t have a straightforward answer for you – because the first half of that term makes it very personal, very powerful, and very vulnerable. I can, however, tell you what it means to me – self-advocacy means sharing my needs, my experiences, my perspectives, and my goals with others to create more accessible and inclusive spaces. To me, self-advocacy is a two-way street, a constructive and open dialogue that can be uncomfortable at times.

After all, a lot of the time we need to advocate for ourselves during serious power asymmetries. Why would an overworked, underpaid doctor want to hear me out? Why does my professor need me to explain my accommodations when it’s a legal requirement? When these gatekeepers (in a dictionary sense of the term, not a name five of their albums vibe) have so much power, it can feel unfair that I have to do all the heavy lifting. But here’s the kicker – when it comes to what I need, and what I’m experiencing, I’m the most qualified person in the room. Every. single. time. And that undeniable qualification is what allowed me to work through the catch in my throat and the tears in my eyes, to show vulnerability and ask for help, and to advocate for myself and my needs.

Self-advocacy is widely acknowledged to be incredibly uncomfortable to do – but maybe it’s worth considering that it’s uncomfortable for the others involved as well. Disability is rarely accurately understood by non-disabled people, and no one likes to feel uninformed or called out. When we take that extra step of encouraging a safe and open conversation, we’re able to honestly discuss what we need and address any confusion or misconceptions that often prevent us from getting it. I know, when you are at a power disadvantage it feels so fundamentally unfair to be asked to put in extra work – especially in life or death situations. Unfortunately, we are working against centuries of systemic ableism and an oppressive status quo – so we are going to have to suck it up and carry on so that the next generation might not have to.

My Experience With Self-Advocacy

Like presumably everyone else, my first kick at self-advocacy (or more so, my failure to kick it at all) was frustrating, embarrassing, and difficult. I haven’t discussed it much, but in the two years between my twin’s diagnosis of JIA and mine – I convinced myself I was just a very empathetic person. I practically gaslit myself into thinking I was imagining disabling pain for two whole years. For that whole time, I didn’t realize I needed to advocate to myself, for myself. Once the pain became (even more) unmanageable, I went to the doctor that referred my twin to a rheumatologist to ask for a referral myself – the same doctor that told the both of us for years that it was just growing pains. I was probably emboldened by her being proved wrong by my twin, which enabled me to approach this self-advocacy with an assertive attitude. To no one’s surprise, except that one doctor, I had JIA too.

My first attempt down and a billion more to go, it was time to take the self-advocacy show on the road. First stop – high school. While the medical model is an absolute nightmare and a diagnosis is no golden ticket, having documentation behind me quieted down those thoughts that used to tell me it was all in my head. I realized that no one knows me the way I know me, and that I’m my best bet for getting the accommodations I need.

Getting my initial accommodations was easy enough, but the real test was when my JIA became so bad I almost dropped out of school. I had to meet with my vice principal, the attendance officer (a chronically ill high schooler’s sworn enemy), and my accommodations supervisor (who I don’t remember showing up) to discuss why I was missing so much school and what we were going to do about it. While I love to prepare for these kinds of meetings now, 17-year-old me had no clue what to expect, let alone what the available options were!

So, I approached the meeting with an open mindset and the acceptance that I would probably cry during this meeting – whether out of frustration, vulnerability, or overwhelm. While I did speak in a croak and wiped away a tear or two, I explained why my attendance was awful and made it clear that I did not know what options were available. And that’s how this self-advocacy thing clicked – once I explained my experience and outlined my expectations (or rather, lack thereof) I was able to work with everyone involved to explore agreeable options and choose what worked best for me. On top of that, some follow-up self-advocacy work on my part with some favorite teachers kept me in band once or twice a week and my first-period literature studies class after that.

With that experience behind me, self-advocacy got easier with practice – but that doesn’t mean it stopped being hard. Switching into adult healthcare was a massive learning curve, and a dehumanizing rediagnosis process was enough to scare anyone away from self-advocacy. After moving 8+ hours away from my family and hometown, I can feel caught mid-air without my self-advocacy safety net. And keeping my cool while being the only disabled advocate a high-level, incredibly consequential consultation on post-secondary disabled students’ supports really tested my resolve. Hard? Yes. Worth it? Always.

I try not to talk too much about my work at NEADS, as I still need to navigate that separation between work and private life to avoid this – (disclaimer: views are my own and do not reflect that of my employer.) But I have to give them credit – being employed to research and create resources on self-advocacy has empowered me – empowered me to learn from others, empowered me to challenge myself to set a good example, and empowered me to feel qualified in my personal self-advocacy work. On the other hand, being so open about my disability and having a by-and-for disability organization on my resume means self-advocacy will always be required in other jobs – and I have a feeling not all of my supervisors or hiring managers will be as understanding as my disabled colleagues. On top of that – I still have future healthcare visits! I’ll have to see a dermatologist soon, and transition clinics only last up until a certain age.

Don’t get me wrong, I don’t regret a thing (related to working for NEADS and being a disability advocate) – disability advocacy has been incredibly fulfilling, humbling, and empowering. From the start, I’ve always had disabled acquaintances reach out to tell me how empowering it is to have someone out there advocating and raising awareness – making them feel more included and understood. I mean, once someone tells you that and once you realize it’s true – how can you stop? And once you get started, you get caught in this all-seasons snowball as your network expands and opportunities become more available. Podcasts, documentaries, and Instagram lives are all really cool – but working with your peers and representatives to make tangible change benefitting your whole community? I still can’t wrap my head around it. Maybe it gets a little (or a lot) weird when people prepare their presentations for your disability inclusion questions, or check you off on the guest list before you introduce yourself – but for some weird reason I have been given the power, positions, and privilege to get stuff done, and I’m going to use everything I am given to create sustainable change for our communities. It would just be too much of a waste not to.

Tips for Self-Advocacy

So – you’ve made it this far. I’ve managed to talk a lot about my experience with self-advocacy without giving any actual tips, so please enjoy this section where I will overcompensate for that imbalance. Or, we can just pretend I’ve centralized all my tips here for simplicity – your call.

Understand that you are the most qualified to advocate for your needs, your experiences, and your goals. No one knows you like you do! And no one has the right to pretend that they know better!

Recognize that self-advocacy is hard for everyone. Self-advocacy requires admitting that things are not OK, and that you need help – literally no one enjoys that! Self-advocacy requires you to challenge the status quo – something many of us are conditioned to never do. By recognizing that self-advocacy addresses forces way out of your control and that all you can do is your best, you’re bringing the compassion and empathy required for effective self-advocacy to the table.

Realize that self-advocacy is a two-way street! Or maybe more like a four-lane two-way street with a streetcar depending on how many people are involved! Self-advocacy requires all parties to communicate and listen, and constructive and empathetic dialogue is your best bet in achieving a better outcome for everyone involved.

Reach out! If you don’t feel comfortable self-advocating just yet, don’t deny yourself essential accommodations or support. For post-secondary students, your student union should have an advocacy support available. For high school students, reach out to your student council, a trusted friend or teacher, a guidance counselor, or a family member for help.

Work through the discomfort, the choked-up throat, and the tears if you have to. These are not a sign of weakness – they really truly are a sign of bravery. When you know that something is hard, or scary, or overwhelming and do it anyway? That’s real power. Starting self-advocacy is the hardest part, but what is hard today is at least a little less hard tomorrow.

You’re probably already self-advocating and just don’t realize it! Self-advocacy isn’t just about accommodations at school or work – we self-advocate in everything we do! We self-advocate in our relationships by communicating our wants and needs, we self-advocate at work and school for opportunities and promotions, and we self advocate in the community when we share our ideas for change.

To answer the second question I completely forgot about until now (I never said I was an organized writer), we are always talking about self-advocacy because it is so personal and complex – there is so much to explore, and so much to improve. But at the end of the day, there is no guaranteed way to successfully self-advocate – there are just too many variables. So, we can share our experiences, our best practices, and a few lessons we learned along the way – the rest is going to have to be up to you.

Trust in yourself, know you’re the best one for the job, and go give them hell – in an empathetic and constructive dialogue-y kind of way.

This story originally appeared on Carly’s blog.

Getty image by SpiritArtist.

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