Welcome to the first of what will hopefully be many Bear Essentials articles addressing issues from disability to inclusivity, from social stigma to economic inequality. Fair warning, these articles are not likely to be comfortable reading at all times. Indeed they are written to challenge perspective, to highlight issues and to encourage change.
This time I am going to discuss the issue of Self Advocacy (deliberate capitalisation). Advocacy has become something of a buzzword around disability and barriers, but I am not really sure the message of what it actually means to those of us who need to make use of it is getting across all that well. So I am going to take a big old swing at it with my own personal experiences and views.
What exactly do you mean by Self Advocacy?
This is pretty much the crux of the problem, as I am not sure how well people on both sides of the issue understand what it means and in my opinion needs to be. So I am going to look at this from two angles. Firstly what is Self Advocacy to me personally with my disability?
Well it seems pretty simple at first glance, it’s my ability to say what I need to enable me to do what I want to do. Well that’s pretty much as easy as it gets right? I mean you say what you need so people can do what they can to provide it? Well yeah… except no, not really, not in practice. Let me explain.
When I am facing the prospect of going somewhere, doing something, or attending an event and I need to explain my needs it generally goes one of two ways.
The easy way: People listen to my needs, accept my request at face value and respond with a yay or nay. Then we can discuss any fine details. This is great, but damn it’s also rare!
The hard way: Someone asks about my disability, I respond and they then launch into telling me all the things they have already done to accommodate extra needs, how much effort has been taken to include me, and how I probably don’t need to worry at all as they can take care of it all for me. Usually at length and with a lot of very well intentioned enthusiasm.
Ok hang on. How is this the HARD way? It’s awesome that people have ideas, things in place and are so willing to make them available to you!
Head wobble time folks. Go re-read that last sentence. No really. I promise I won’t sneak off! Can you spot the problem? You probably can’t, to be fair until I started to live the experiences I have, I wouldn’t have seen it either. But it’s pretty mind blowing when you do see it. Does that sentence remind you of school? I bet it does. Teacher tells you what resources are available so you can do something, after all they know what’s there and what you need. Really great to enable a child who is learning (ok actually there is a lot of debate about the truth of that, but that’s not what I’m here to discuss). But is that the right approach to an adult’s disability or requirements, or even to a child’s? I would argue that it is very much not, indeed the sentence itself is actually disabling.
You see the issue here is the context, at face value the second approach may seem amazing in its scope and size. But the issue hinges on who actually knows the needs of a disabled person best? The person asking or the people/organisation being asked? I would argue, and I do, strongly and often that I am a thousand times more qualified to explain to you what I need to achieve something, and moreover that I am more than a little offended at the idea that you have already figured it all out. You may very well have done a lot of work to help, and that’s fantastic, it really is. But that doesn’t mean it’s all done and dusted, requirements and disabilities are much too varied for that. Great, we can see what you mean, problem solved! If only it were so…
Sadly in reality, the issue tends to get worse at this point, it’s not just that at times we fall into the habit of thinking we know what those we perceive as in need, need. No it’s that all too often we become defensive and offended when they tell us we are wrong. This is not a hypothetical folks, I have lived this, multiple times, as have many friends with disabilities. We are offered a menu of solutions and then if we ask to alter that menu, or for something else, we are made to feel that we are being ungrateful to someone who has put in all that work to make sure we don’t have to need anything! Now I am by no means suggesting that this is intentional, I am sure it’s not. But I am saying it is so deeply ingrained into our society that it becomes almost unavoidable, and that’s where Self Advocacy comes in, both learning to do it well, and to listen and respond to it properly.
That Other Viewpoint
Right so I said I was going to look at this from two angles (remember that?) and now we get to the second one. This is about how I and Green Bean Project’s team try to address the issue in coffee industry training (you didn’t really think I could pen an entire article without coffee in it did you?).
When we are approached by a client who has requirements to access training, whether physical, mental or social, we first ask them to take some time to explain those requirements to us. We make a lot of notes, ask a million questions and then we go off and think about ways we can meet these requirements. This is then followed by proposing a plan to the client and ensuring they are happy with the accommodations we can make.
Now I am going to be “one of those people” for a brief moment and ask you to look at the paragraph above, and pay particular attention to the language I use. Words are my stock in trade, and so I can be over specific at times, but in this case it’s very deliberate. Note that I use the word “requirements” not “needs” or similar. Why does this matter? Because the use of “needs” flavoured words tends to encourage what I call the “parent/teacher reflex”.
By defining something as a need in this context we can create the idea that there is something special or exceptional about this person accessing whatever we are discussing, that we as the perceived “adult” have to find a solution for them. This is a huge issue, and one I am deeply passionate about, the ability for someone experiencing a barrier to access being able to take part in our training is not special or exceptional. Rather our training and programs need to be accessible to them. I believe that in changing our language, we begin to change our perspective and thus to evolve our approach.
I am not saying we at Green Bean are perfect, we really aren’t, and we have so much more to learn, but I would ask you to look at our approach and ask yourself how yours compares.
So to summarise my point. The purpose of Self Advocacy should not just be to allow access to places and training, while that is a laudable goal, we can aim a lot higher. Understanding Self Advocacy can enable us to move away from the historical view that those with disabilities or “special needs” (not a term I would ever use as a rule but I am using it both for impact, and because it is contextually relevant) are somehow in need of exceptional access to “normal” stuff. Instead we can begin to see acceptance and inclusion as deeply un-exceptional, to believe that as a matter of course this should just be the way things are. This is about changing our views and making the world inclusive.
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Thanks, – Bear