Self Advocacy: Why Is It So Hard?
Self advocacy is essential, vital, crucial, 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, 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 “self” 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 5 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 others involved. 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.
Tips for Self Advocacy
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 okay, 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 counsellor, or a family member for help.
Work through the discomfort, and 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 anyways? 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.
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’s just too many variables. So, we can share our experiences, and 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.