The invisible struggle of being a disability advocate

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I readily put my hand up and say that of late, perhaps even for well over a year, I feel like and probably have been a poor disability advocate. Often finding myself shying away, not speaking up, not joining in the conversation and then berating myself for it.

I have always been fairly quiet, more of a listener than a talker, a text me don’t phone me person, speaking only when I have something to say, although funnily I used to do well with leading workshops and production meetings. However, becoming chronically ill and trying to navigate an all too inaccessible world, which seemed to keep telling me that I was an inferior being now, changed that. The rage at not being spoken to if I was using my wheelchair, the anger of being referred to as a wheelchair like I was an object as people stepped over me, leaned over me, hanged their handbags off my wheelchair handles and moved me out of the way. The humiliation of crying in public because you’re just so tired of things being inaccessible or being spoken to like you’re less than human. All of that helped me use my voice and start to speak out. Sometimes, I surprised myself at how much I had to say. Sometimes, I even thought that I was probably talking too much. But that’s insecurity talking and probably goes hand in hand with being a disabled person and a disabled woman at that.

So, why the silence?

Well, just as the injustices and inequality of being a disabled person in an inaccessible and often downright ableist world can make you shout out, it can just as easily make you go quiet and retreat.

As disabled people simply trying to live and go about our day can bring up plenty of challenges and difficulties that can eat away at our confidence and affect our mental health. It all adds up. You’re frequently made to feel like a burden, othered and like you don’t belong. It’s tiring and it’s lonely.

When you consciously decide to be an advocate and seek a sense of community and visibility from disability rights organisations, companies, campaigns and individuals also using their voices, the more you can absorb their injustices, pain and anger too. The more people share the more you get this cumulative effect of others sharing their own experiences too. Not that this is a bad thing. People speaking out is imperative, people feeling empowered enough to share is vital for instigating change.

Unfortunately, all too often sharing our lived experiences can prompt further ableist responses and opinions. Being told not to complain, that we shouldn’t expect the world to adapt to our needs or uphold our rights. This seems particularly prominent in the midst of this pandemic with access not being considered in new “Covid safe” measures and public opinion that “vulnerable” people should be locked away while everyone one else “get on with their lives.”

Seeing the sheer scale of injustice and knowing that this is only the tip of the iceberg, that there is plenty more that goes untold, can be overwhelming. Evidencing so much discrimination and hurt can make the task of making the world more accessible, accepting and accommodating feel insurmountable.

Conversely, when you do speak up and express yourself you can feel like you’re shouting into the void and no one is listening. Particularly not anyone outside the D/deaf, disabled and neurodiverse communities. It can feel like banging your head against a brick wall trying to get your voice heard, trying to make a change and witnessing how long changes take to happen, if they do at all. Which is really disheartening.

Admittedly, this is part of the reason why sometimes I don’t write and prefer to take a more practical approach, that also satisfies the stage manager in me.

At a low ebb last year, I asked on Twitter whether all this affected other disabled peoples’ mental health and had many replies that it did/ it had. Hardly surprising really. Some expressed that their experiences left them anxious to leave the house in expectation of access issues or being made to feel like a problem on top of how difficult it can be just to the leave the house. Another said that the level of resistance to making accessible changes even after decades of campaigning was difficult to bear, the anger negatively impacted their physical health and that the hostility was damaging.

So, what can we do?

Firstly, it’s really important that you are aware of thoughts and feelings that happen in the moment as a result of witnessing or experiencing something and long term thoughts and feelings alongside other symptoms that might be more indicative of a mental health issue. If that is the case then please do not be afraid to seek help for it and speak to a professional. 

Keep monitoring yourself, just as you do with your physical health. Seriously, disabled and chronically ill people are some of the most self aware people I know, constantly making judgements and assessments.

But on the whole, do we simply give up, shut up and put up?

Of course, it’s down to each individual. Each of us must feel empowered to make the choices that are right for us and to recognise that we have that right. Acknowledging this in a world that tries to tell us otherwise and tries to take away our rights is a radical act.

But how do we connect to that empowerment?

Let me start by telling you (and myself) that you matter. That your feelings are valid. That your rights matter. That being able to leave the house for whatever reason without having an access nightmare matters. That you absolutely do not deserve to be made to feel inferior or like a problem. Your opinion matters. Your lived experience matters. You have the right to take up space and to have your voice heard.

Even if your self worth has been beaten down deep inside you and you feel that you don’t have any value. YOU DO. And it’s important that you somehow learn that you matter, that you belong, that you don’t deserve to be cast out.

The blunt truth is that you might be able to take a break from advocating, campaigning or limit your social media feed but you cannot take a break from being D/deaf, disabled or neurodiverse. We cannot change that.

In contrast, nondisabled people might not always have that privilege. The majority of people who can be defined as having a disability are not born disabled and disabled people are the largest minority group worldwide.

Speaking from experience, having become disabled at 24, you can go from feeling like all doors are open to you to literally not being able to get your foot, or wheels, in the door. From being spoken to, to being spoken over. From being an adult to being treated and feeling like a child.

So when you speak up, if you decide to do so, remember you don’t just speak for yourself, you don’t just speak for disabled people, you speak for everyone.

Take breaks if you need to.

Work on your self worth or your impostor syndrome.

Seek out positive news and people who are making changes.

Know that you are not alone. There are thousands of others feeling like you do. There are thousands of others shouting out for change. People who understand. Share their words. Amplify their voices. Particularly, if your own feels lost.

Think about how the lack of representation of D/deaf, disabled and neurodiverse people has added to that sense of being suppressed and the effect it’s had on your confidence.

We live in a society that places the expectation of change on D/deaf, disabled and neurodiverse people. Adapt or put up with not being able to access something. Almost as if it’s blaming us. The onus to adapt is on each individual. But this is not one individual asking the world to spin around them. This is millions of people globally who society dismisses in some way or other. How is this acceptable?

It is not us who needs to change. For many of us, we cannot change. It’s society that needs to change. It’s poor accessibility, the lack of consideration of disabled peoples needs and the lack of consultation with disabled people that needs to change.

At the start of this post I called myself a poor disability advocate. Deep down beneath the insecurity and impostor syndrome I know that I’m not and that it’s really a lack of feeling empowered and protecting myself from further upset. This pandemic might mean that I cannot always advocate in the way that I’d prefer right now but I still have a voice and I shouldn’t be afraid to use it.

And neither should you.

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