Practicing self-advocacy as a disabled person

I’ve had to learn and practice a myriad of things in my life as a disabled person; confidence, independence, braille, how to tolerate the robotic voice of my screen-reader… The list could go on. I often had someone by my side to guide me through these processes, but self-advocacy was a different story. 

The concept of self-advocacy was a foreign concept to me when I was growing up. References to its importance were scarce, and I was never equipped with the tools or information to be able to do it effectively. 

It therefore became a self-taught subject, and whilst I love to learn (yes, I was a swot), there have been aspects of this topic I’ve found tricky to sit down and commit to. 

That’s why the revision books are back out today as I intend on talking you through what’s helped me along this journey to becoming more assured in my self-advocacy skills. 

As always, my aim by writing this is to help others who might be looking for tips or advice they can apply to their own approach. As you’ll soon read, learning from and witnessing how other disabled people go about advocating for themselves has been one of the biggest motivators for me to able to do the same, so I hope someone else can find that sense of comfort and relatability in my words. If you’re able to share a few pointers of your own too, you might just earn yourself an A at the end.

What is self-advocacy?

First things first, let’s take a moment to recognise what self-advocacy is and why it’s important. 

At its core, self-advocacy is all about speaking up for yourself and clearly communicating your requirements to others. For disabled people, it is the tool we use to ensure our access needs are met and our rights are respected.

But in reality, doing that is much easier said than done. Stepping up to advocate for yourself can feel incredibly daunting, especially when societal barriers or internalised ableism come into play.

With that in mind, here are just a few things that allow me to practice my self-advocacy skills more effectively.  

Understanding my access requirements

As someone with a deteriorating eye condition, my access requirements have evolved alongside the different stages of my sight loss journey. The handheld magnifiers I used in primary school were later substituted with electronic ones, before being completely disregarded in favour of a screen-reader.

Braille has also had its moments at certain points in my life, and of course we can’t forget the time I admitted to myself that a white cane was a must if I wanted to avoid, or at least lessen, the frequency of falls and crashes.

Beyond that, I’ve had to take note of what I need at events, when requesting information, and what will allow me to do my job effectively. It could be anything from requesting alternative formats, to asking for materials ahead of time, or even asserting how I want to be guided.

For a long time, I didn’t necessarily know what my access requirements were, nor did I know what counted as a reasonable adjustment, let alone how to ask for one.

Internalised ableism pushed me to adopt a very unhealthy ‘power through’ mindset, which saw me denying the adjustments I needed just to grasp a sense of ‘fitting in’. (Spoiler alert: it never really worked).

Trying to belong to a non-disabled world saw me distancing myself from my identity and the tools I needed to navigate life with a little more ease, and resisting reasonable adjustments meant I was rejecting the idea of learning about how they could benefit me. Naturally, that left me without the knowledge to ask for what I needed. Internalised ableism has a lot to answer for, as you can tell.

Over time, I’ve actively chosen to redirect the energy I was using to dismiss or hide my access requirements into a meaningful effort to understand and acknowledge them.

I’m now much better at identifying what adjustments I might need in different situations, and possessing that knowledge rather than quelling it means I’m better equipped when it comes to speaking up.

Learning from others

Witnessing advocacy in action has been one of the most empowering tools for me in terms of assessing and advancing my own skills.

It all started on social media (doesn’t it always these days?) when I began to discover fellow disabled people sharing their lived experiences and speaking out about the barriers they faced.

I was always told that I needed to voice my access requirements, but as someone who didn’t know any other disabled people when I was younger, and with media representation adhering to stereotypes rather than authenticity, I had very little guidance to be able to do this with confidence.

That’s why starting my blog and finding the online disabled community was so transformative for me. It introduced me to people who were also finding their feet with this whole self-advocacy business, as well as those who were more established in their journeys.

Since leaving school a decade ago (yikes), I’ve dedicated my time to working and volunteering in the third sector, which has naturally placed me in the same circles as fellow disabled people. It’s been a breath of fresh air to absorb insights from seasoned advocates, whilst chatting through techniques and ways of building confidence with those who have been in similar stages to me.

Knowing my rights

How many times have I parroted the importance of knowing your rights as a disabled person here on my blog? I think I could write about it a hundred times and it would still be just as vital as the first.

I remember sitting in a meeting when I first joined the company I work for, and being asked if I’d ever been taught my rights as a disabled person. My answer was a flat no, and I think that speaks volumes about how disabled people’s rights are viewed in society.

Six years on from that meeting, I can confidently say that I’m much more certain of my rights these days and how to use them. Working for a Disabled People’s Organisation (DPO) has naturally had a massive hand in bestowing that knowledge.

I know the legalities of rights can feel a little daunting, but you don’t need to sit down with a copy of the Equality Act to understand what you’re entitled to.

My employer actually has a handy guide on knowing, using, and living your rights if you ever fancy reading through a resource that was produced by disabled people (unfortunately, I don’t get a bonus for mentioning that!) But simply chatting with fellow disabled people can be just as enlightening.

For me, understanding my rights has helped me assert my access requirements and speak up when they aren’t being met, or when a system or service fails me and my community.

Our rights are non-negotiable, and it’s important that we say that with conviction, both in our own minds and when communicating with others.

Distancing myself from guilt

Now this is a tricky one. A few years ago, I penned an entry about learning to leave guilt behind as a disabled person, in which I noted all the things that were aiding me in that pursuit. 

Employing those techniques has seen me slowly shifting away from the guilt I used to feel when asking for reasonable adjustments or flagging inaccessibility.

I used to feel like I was in a hopeless tug-of-war with my own guilt, with the strength of the feeling pulling me forward into compliance. But after discovering and implementing different strategies, I eventually found ways to dig in my heels, and the centre point in the dirt became a boundary I was no longer willing to cross. 

Of course, the phantom tug is still there at times, but it no longer moves me in the same way.

All of this means I can now ask for adjustments without sticking an apology at the end of my requests, and that I also no longer diminish or sacrifice parts of those requirements in order to make them more palatable to implement.

Say it with me: It’s not our fault if things aren’t accessible so we shouldn’t feel guilty for asking them to be. 

Giving myself permission

I have always been one to wait for an invitation to speak, leaving my thoughts to rest in an un-raised hand. My introversion was the culprit that drew this initial boundary but yet again, internalised ableism cemented it, forcing me to doubt the worth of my own voice and requests. 

When I plucked up the courage to make my needs known, society often overwrote the request with suggestions that denied my autonomy and independence.

’Can’t someone help you?’

‘I’m sure a family member could read that out to you.’ 

Hearing these proposed workarounds on repeat created a playlist of unhealthy thoughts, and my efforts to skip ahead to more of an upbeat track were futile due to the prominence of the dismissals.

Ableism and lack of awareness became tracks I heard in so many situations, playing on such a high volume that any inner voice of reason became impossible to hear. 

But with time and perspective, I became cognisant of the fact that lack of awareness or effort when it came to accessibility and inclusion weren’t valid reasons for me to refrain from requesting them.

I also realised that it was very unlikely I would be asked about my access requirements as the question simply wasn’t at the forefront of people’s minds. 

I therefore had to learn to give myself permission to speak, to become comfortable with the uncomfortable and reassure myself that it’s okay to put my own needs above society’s awkwardness.  

Sharing with others

I’ve already given my blog a shoutout for its role in introducing me to fellow disabled people, but I also have to acknowledge its significance in my advocacy journey. 

Little did I know at the time of creating my corner of the internet that I’d be building a platform to develop my self-advocacy skills. As I mentioned, I had no inkling as to what that term meant when I hit publish on my first post as a sixteen-year-old, but I was unknowingly advocating for myself with almost every piece I put out into the world after that.

Sharing my lived experience and engaging with others allowed me to witness the positive impact of speaking up about the things that mattered to me. Hearing people say they could relate to what I was sharing, or that they had learned something that shifted their mindset, instilled a sense of confidence I had never experienced before. Over time, that confidence became the driving force for my advocacy.

My role as a mentor for young vision-impaired people has also played a part in this. I’ve often had to revisit moments of my own lived experience to share advice, tips, and tricks with my mentees. This has forced me to look back at my younger self and identify the approaches and mindsets that carried me forward.

The messages I give to my mentees often mirror the pleas I pen in my blog posts, urging disabled people to claim their space. What I didn’t realise as those words filled the screen is that I was inadvertently learning to occupy my own.

My blog became a place where I’d demand better for fellow vision-impaired people and, subsequently, for the wider disabled community. Each piece of writing became a rehearsal to demand it for myself, too. With every sentence that addressed a common misconception or called for change, I was lowering an anchor of self-advocacy and now, eleven years on, I can safely say that it won’t be unmoored.

Knowing my worth

Coming face-to-face with stereotypes and discrimination certainly did a number on my self-worth and sense of belonging. And yes, I know what you’re thinking, here we go again with internalised ableism’s role in discouraging me from speaking up and respecting myself. 

It’s incredibly difficult to feel worthy of adjustments when society denies them, or implements them in part or as a ‘one-off’, with no expectation for me or other disabled people to show up again. 

When I was younger, I constantly felt as though I was an inconvenience or a burden, and whilst these beliefs didn’t mar my overall positive approach to life as a vision impaired person, they did grasp my shoulders and pull me back from reaching out for support.

Learning about the Social Model of Disability became the remedy for that silence as it helped me to realise I wasn’t the problem. Prior to knowing about the Social Model, I interpreted lack of access and inclusion as part and parcel of being disabled, not realising that the real disability was carved into these barriers.

I was also basing my worth on the stereotypes I heard, believing them to be the baseline for the treatment I should expect. 

Oh how I wish I could give younger Elin a hug right now. 

Thankfully, I was able to turn all of this on its head. Understanding that the world wasn’t designed for disabled people, and that’s not our fault, was a game-changer, especially in eradicating self-blame from my mind. 

We are disabled by societal barriers, and so we should refuse to balance the delicate weight of our self-worth on the bones of a system we are not responsible for fixing. 

As disabled people, we are worthy of access, we are worthy of support, we are worthy of inclusion. Never forget that. (Yes, that reminder is for me as much as anyone else). 

Setting boundaries 

Last but not least, let’s talk about boundaries. 

It’s safe to say that my advocacy has swung from one extreme to the next. From allowing ableism to suffocate my voice, to exercising it in my day job, my mentoring, and through my blog. It’s been a journey and a half. 

Now that advocacy is threaded into so many facets of my life, it’s easy for that effort to knot into exhaustion. That guilt I mentioned earlier has infringed on my advocacy in more ways than one. Whilst it once kept me from asking for support, now it whispers that silence on any single issue is failure.

Over time, I’ve learned that success in advocacy and self-advocacy alike isn’t dependent on being the loudest voice or speaking up about every matter. Yes, it’s important to voice what you need to dismantle barriers, but it’s just as vital and valid to take time to rest and recharge following the exhaustion of that effort.

It’s a fine line between not settling for anything less than the rights you’re entitled to, and not falling victim to burnout. I’m all too familiar with how much time and energy self-advocacy can take, especially when barriers plague so many aspects of our lives. All I can say is to set a standard of kindness for yourself. When you do come face-to-face with inequality, remember you can always fall back on that baseline of support you’ve built.

For me, the hardest boundary to draw was the one that stopped me from shrinking to fit society’s expectations, but I’m glad that my energy is no longer lost to that self-suppression. All I hope is that, by sharing my lived experience, it helps others find the words they need to thrive.

As I grew up, learned about my rights, and chatted with others in similar situations, it was as if a fog was lifting, unveiling everything I had previously denied myself, from workplace adjustments to my own voice.

As these things became clearer to me, my tolerance for inaccessibility and inequality dwindled and was replaced by a passion to challenge injustices, not only for myself but for my community too.

I’m far from an A* student when it comes to self-advocacy, but I’m more confident in my ability to do so than I have ever been. To me, that’s the best result I could ask for.

I’d love to hear about your self-advocacy journey. What has helped you take steps forward? I always find it fascinating to pick fellow disabled people’s brains about these kinds of topics. Our community is such a force to be reckoned with and with the rise of people sharing their experiences online, I think we’re all able to take a little something away from our movement’s advocacy and campaigning. I for one have learned so much from fellow disabled people, and there is no doubt that there’s more to unearth as I make my way further along this self-advocacy path. I hope you’ll join me. 

Elin x