Almost everyone who knows me knows that I am passionate about disability advocacy. However, I don’t think that everyone necessarily understands the complexity behind the reasons why.
I am disabled, so I want to live in a world that is more inclusive towards me, and towards people like me. I have always wanted to speak for myself, as opposed to being spoken for, because I best understand my own needs. I want my life to have meaning, and for me, that meaning is to leave the world a better place than it was when I entered it. These are all huge (and partially self-explanatory) contributing factors, but they only explain to a limited extent why I choose to educate and advocate as a disability activist. They explain my goals. They do not explain the motivation behind my methods.
Large portions of the disabled community are starting to become frustrated by the fact that they are always expected to act as ambassadors for their community. They argue that expecting disabled people to constantly self-advocate to be included is unfair, and places the responsibility for making environments and situations accessible and inclusive onto the disabled person, as opposed to society. It should be the responsibility of individuals, groups and especially organisations – of society as a whole – to educate themselves on how to be inclusive and how to appropriately act as allies to people with disabilities, and disabled people shouldn’t have to constantly ask for basic accommodations and respect for their human rights.
Furthermore, the argument is that disabled people (just like everyone else) should be allowed to have a bad day, run out of patience, and to not always have to act as a perfect posterchild for an entire group of marginalised people. They should be allowed to be offended when someone does something insensitive, exclusionary, or frustratingly ignorant, as opposed to constantly trying to put the nondisabled person at ease.
Lastly, it is worth noting that disabled people often have to spend large amounts of energy on day-to-day tasks that might require much less energy from nondisabled people, and that disabled people might not have energy left to educate patiently after a long day.
I agree with these arguments. It is unfair. The arguments are completely in line with the social model (a way of framing disability to which I subscribe) which is based around the idea that disability is created through an exclusive society and inaccessible environments, and that impairments simply form part of diversity. This is as opposed to the medical model, which frames disability as synonymous with the impairment, and sees it as something that needs to be fixed or cured. This model places the responsibility on the disabled person to adapt to society as much as they can to be perceived as normal.
I obviously do not agree with the medical model way of seeing disability. So why do I choose to spend my energy on educating nondisabled people? Why do I argue that this should be done with patience and grace? Here are some key reasons:
- I strongly believe in the common catch phrase that has been used in the disability advocacy community for decades: Nothing about us without us. I want a say when it comes to my own needs, because I understand them best. The nondisabled have made decisions on behalf of the disabled for centuries, and this needs to stop. I don’t feel that I can necessarily trust everyone to do their own research on disability, because the internet is full of opinions about disability that are expressed by nondisabled people, opinions by disabled people who have internalised ableist beliefs, and views that simply just do not reflect my own. Disabled people are diverse, and their opinions and needs differ. If I want to be accommodated as an individual, I don’t want to be spoken for.
- This is closely related to my next reason. Self-advocacy makes me feel empowered. Before I learned to stand up for myself and my community, I did not have a voice. It is so easy to fall into a state of learned helplessness, allowing things to be done for us instead of seeking ways to do those things independently. It is so easy to simply accept things the way they are, or to complain about them with no plan on how to address them. There are many problematic elements of society, but I choose to believe that most people out there are not actively out to get me or trying to make my life miserable. If I believed the latter, I would be whiny and self-pitying, and that doesn’t align with how I perceive my identity. I prefer to see myself as capable, and as an active storyteller in my own life.
- Right now, the harsh reality is that I will not be fully included if I do not speak out. Change will either not occur at all, or it will occur at a much slower rate than desired. I would like to work towards a world where this won’t always have to be the case. A world in which disabled children won’t have to learn to be fighters almost as soon as they can express themselves. I am working towards such a world, but part of working towards this involves exactly that: Educating and self-advocating. If I should have disabled children, I would teach them that it isn’t fair that they should be expected to constantly be the ambassador, yet I would also teach them self-advocacy and problem-solving skills anyway.
- Simply having spent my whole life as a disabled person has made problem-solving one of my strongest skills, and this is highly prized in the workplace and in multiple other spheres of life. If I had not been born blind, I might have not been nearly as resilient and adaptable as I am today. These are strengths that I highly value within myself. Charles Darwin is often quoted as having said that evolution is about the survival of the fittest. However, what is often left out is that Darwin defined “fittest” as meaning “most adaptable”. I want to live in a society where disabilities are not seen as shortcomings, but in which diversity and adaptability are seen as strengths.
- As for the argument that disabled people should be allowed to have a bad day and not always be expected to react politely to frustrating situations, to that I say absolutely! I (as an individual) have all the right in the world to occasionally have had enough. I have the right to sometimes lose my temper at a ridiculous situation, just as every other individual in the world has that same right. However, with this comes the need to realise and accept the reality that the person that I snapped at isn’t going to walk away understanding disability any better than they did when they did whatever it was that offended me. To the contrary, they might just avoid speaking to disabled people altogether after such an interaction, as they might be too scared to offend again. If I respond angrily or sarcastically to a well-meant (though perhaps ignorant) question about disability, I discourage nondisabled people from asking questions in the future. I squash interest in disability-related matters instead of creating awareness, I discourage people who might be trying their best to learn, I alienate potential allies, and I accomplish exactly nothing.
So why do I advocate in the way that I do? Simply put, because inclusivity breeds inclusivity. In my 29 years of experience as a blind person, I have found that the patient and gentle responses are simply what work best. For three years during university, I acted as chairperson of a student society that raised awareness about, and advocated for the rights of disabled students. What stood out to me about our society (vs. other advocacy-type societies on campus) was that we made it fun for nondisabled students to attend our events. Nondisabled people didn’t feel attacked and blamed, and so they actually became interested in disability-related matters, became allies, and sometimes radically changed the ways they talked and thought about disability. Some other societies did not adopt the same approach as we did, and the result was that many people just avoided joining their societies or attending their events. These societies positioned people who were not members of the group for which they were advocating as “the other”. There were some societies that I would have joined as an ally (because I cared about the cause) but their methods made me feel as if my opinions and ideas didn’t matter at all, and were offensive simply because they were coming from someone who wasn’t part of the specific demographic group.
In conclusion, there are many reasons that I choose to advocate and educate. Some are personal, and some are ethical. However, the reason that I spend my valuable time teaching others (as opposed to either yelling at them or simply not addressing systemic discrimination in society) is because that is what works best, in my experience at least. Of course there is room for a more combative approach in certain situations, especially when dealing with organisations and governments, or when the gentle approach was used unsuccessfully. However, when dealing with individuals, I believe that calm, empathetic, two-way conversations are what will result in my views being heard and respected.
I choose to take up a tool, because I want to help to build the kind of society that I wish to live in. I choose a chisel instead of a hammer, because a hammer destroys, and a chisel shapes. I choose to shape.