You may have heard the saying the squeaky wheel always gets the grease. I work in advocacy and live with a disability, and have realised the saying is absolutely spot-on. The provision of services to people with disabilities is not only inadequate, but it is also inequitable. My theory is that this is because some people and groups are better than others at advocating for themselves or they have other people around them very good at advocating on their behalf.

Examples of inequity can be seen at both the individual level and when comparing outcomes for different disability groups. In my experience it is people with severe communication impairments who are the worst-off when it comes to having their rights recognised. It is not surprising that it is this group that faces the greatest barriers when speaking out for themselves. 

Make some noise

If you want to have your rights recognised and upheld you need to make some noise. If you're too quiet and don't squeak when you're stood on, you may find yourself completely squashed! This is why one of the first steps involved when learning to self-advocate is to learn how to make noise when your rights are being threatened.

Let me give you an example. When I was at university, I was told there had been a “change to the rules” and I could no longer use my university-funded assistant to assist me to use the bathroom. I could have said nothing, accepted their new rule, reduced my fluid intake and endured the discomfort of a bladder bursting at the seams. In my early teens that is exactly what I would have done. I had little understanding of human rights, of disability rights, nor of reasonable adjustments. When bad things happened, and they did, I felt powerless to do anything. 

A growing determination to speak out

By the time I was in my mid-20s I had discovered the social model of disability, identified with the disability rights movement, and had a growing determination to speak out and take action in situations where my rights were being violated. After that there was no stopping me!

There was no way I was going to accept this change in policy at my university without a fight. I constructed an email to the head of student services that not only outlined my rights as legislated under the Disability Discrimination Act (1992) but also included threats of contacting the media. I even threatened to ask the Vice-Chancellor to assist me with my bathroom needs because student services was too stingy to provide funding for it.

The response to my letter was to make an exception in my case to allow me to continue receiving assistance from the university with my bathroom requirements. At the time I was satisfied with this, but these days, my craving for justice is simply insatiable! If my experience at university happened today, I would not rest without a public apology and an agreement to overturn the change to the rules for everyone.

Rights belong to all of us

Rights belong to all of us, not just to the people who are able to make noise and (metaphorically speaking) jump up and down. But in reality it is the squeakiest wheels who will be the first to have their rights recognised and upheld. Thankfully, there are also flow-on effects for people who are less able to speak up for their rights, so at some point, all people with disabilities benefit from the muckraking of the rowdy few.

When I took on the role of coordinator of the Youth Disability Advocacy Service in 2006, I wanted our service to support young people with disabilities to be the loudest wheel in town. I still remember how hard it was for me to be vocal about my rights when I was younger. It is especially hard to speak up for your rights when you are young, partly because you don't have the skills and a strong enough understanding of your rights, but also because you are led to believe that older people know best.

Louder and stronger

When these older people are denying you access to a decent education, to necessary services, and your basic rights, you are not in a good position to do something about it. That is why a big part of what I do as an advocate is to educate young people with disabilities about their rights and about how to be louder and stronger advocates for themselves. Of course, you're never too old to learn about your rights and what you can do to get fair treatment. It’s also never too late to start making noise.

If you need help with a problem, the Disability Advocacy Resource Unit has a map (opens new window) that enables people to find local organisations and networks.

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