Little Miss Understood

by Cass Embling

Welcome back! While my last post was quite sweet and light-hearted, this one is probably going to be a little heavier and hopefully more thought-provoking. For quite some time now, I have wanted to share some of the assumptions, biases and misconceptions we often face in our day-to-day lives as people who are blind. But I feel as though I am tiptoeing through a minefield.

I want to somehow strike a balance between highlighting these while avoiding making anyone uncomfortable. Some readers may realise that they themselves have made these assumptions or have these biases, and while I hope that this post will help them to challenge those beliefs, I don’t want to alienate anyone by pointing it out.

I also want to avoid speaking on behalf of everyone who is blind. As I have mentioned in the past, I never want to be considered as the mouthpiece for the blind community. As a result, I am going to share some of my own experiences and explain how they made me feel in the hopes that it will demonstrate some of the situations we encounter from time to time. So, buckle up! Here goes.

The level of unemployment among people with disability is strikingly high. And according to Blind Citizens Australia, the unemployment rate for people who are blind or have low vision is even higher at four times the national average. I believe there is a myriad of reasons for this (most of which are well beyond the scope of this post), but I think that the underlying assumptions/biases/misconceptions some people may have regarding people with disability are a contributing factor to this discrepancy.

Let me share a story. Not long after moving into my apartment (where I live alone) I hired a support worker to help me with various bits and pieces. When I invited her into my apartment for the shift, she immediately exclaimed “oh wow, it’s actually really clean in here”.

While I can’t share her tone through the written word, I assure you it was surprise. I felt two different emotions at that point. First, I was chuffed. I am a clean freak and I take a lot of pride in my apartment. I like it to be neat and tidy, so it felt good that this total stranger thought I had done a good job.

Second, I was upset. She was clearly surprised that someone who is blind could maintain a clean apartment, and that felt pretty patronising if I’m honest. Granted, there could be a reasonable explanation for this. Perhaps she had visited an apartment of another client who was blind previously and it wasn’t clean. But the fact that she had obviously assumed my apartment would be dirty worried me.

Indulge me for a moment. Imagine that she ends up conducting job interviews in a future role. If she subconsciously thinks that I couldn’t be capable of keeping my apartment clean, how could she possibly believe that I could be capable of making a meaningful contribution to her organisation? Sure, I am probably reading way too much into this scenario, but I do believe that this story illustrates the subtle ways that some people underestimate us and our abilities. It is these sorts of underlying beliefs that make it very hard for us to break into the workforce and prove ourselves more broadly.

I do not have a “carer”. Personally, I hate that term. Sometimes I will hire a support worker, which is something that has been made possible thanks to the National Disability Insurance Scheme. But I see this as a luxury that can help me achieve something more efficiently or that can help me preserve energy for something else. As a friend of mine says, “why make life harder than it needs to be”?

Sure, I could take my cat in his carrier to the vet on the tram. But he would hate that, and so would I. I could use Uber Pet, but truth be told, it’s useful having an extra pair of hands in the vet anyway. So why wouldn’t I hire a support worker for an hour to keep Magic (my cat) and me both happy and as comfortable as possible?

But these formal supports do exactly that, “support” me, not “care” for me. There is also often an assumption that we must have a “carer” with us at all times – we couldn’t possibly live alone. When calling to place an order over the phone because a website was inaccessible, my friend was asked, “Can’t you just get your carer to help you?” I must admit, my inner Karen wanted to retort with “Can’t you just make your website accessible?”?

But it is always better to play nice. Formal supports are great, but for me they are a luxury. There is always another way to achieve whatever I need to do.

When I am out and about with someone (whether that be a support worker or a family member or friend) people will often speak to them rather than addressing me directly. For example, I have had wait staff at a restaurant ask my companion “and what does she want?”

I am capable of thinking and speaking for myself, so I hate it when people don’t address me directly. I have also had people speak to me very slowly and very loudly. It’s my eyes that don’t work too well. My ears and my brain are fine! But again, these sorts of scenarios worry me. If someone’s instinct is to address our companion instead of us, or speak to us slowly and loudly, I think that that exposes some unconscious bias. Deep down, they must assume that we are incapable or perhaps less intelligent.

I can use stairs and escalators safely. And I can walk at a reasonable (actually quite a quick) pace. Often when someone guides me for the first time (perhaps at the airport, for example) they will often walk at an excruciatingly slow pace. And they nearly always avoid stairs and/or escalators.

This tends to amuse me because they have probably just witnessed me gallivanting up to the counter at top speed. I love it when the person guiding me asks me if the speed is okay and if I would prefer the lift or the stairs/escalator.

I have already talked about this in an earlier post, but another common misconception regarding guide dogs is that they do a lot more of the heavy lifting than they actually do. Don’t get me wrong, these dogs are phenomenal! But guide dog mobility is teamwork. The dogs don’t know when the light is green or what train we need to catch.

And please let me assure you, these dogs love their work! I have had people in the past tell me that I am cruel for working my dog. Watch how excited she gets when she finds the thing I am looking for and tell me she’s unhappy in her work. And don’t worry, these dogs have plenty of time to be dogs too. Whenever I am at home, Cora is off harness and can roam around my apartment. She has plenty of toys that we play with, and she gets to free run at the park or beach from time to time. I believe that it is super important for Cora to be a dog and to let off steam when it’s the right time and place.

Now let’s tackle the complexities of language. Firstly, I don’t mind if you use visual language around me such as “watch a movie” or “have you seen so and so lately”. Sure, I may not have physically watched that movie with my very own eyeballs, but I think it’s just a figure of speech anyway. Plus, saying “have you heard that latest rom-com” sounds ridiculous! I also think it is a little awkward if you start to use that visual language and then correct yourself… “have you s… heard that latest rom-com”?

Secondly, I also don’t mind using the word “blind” (in case you haven’t noticed). I am happy to say “I am blind”. Some people seem to want to avoid the word as though it is too harsh or offensive. I have heard it phrased as “having sight issues”, “having limited sight” and “being hard of sight” as examples.

Admittedly, as a kid I did hate using the word “blind” and would prefer to say “I can’t see” because it felt less jarring. But now I am perfectly okay with it. There is also a movement these days that advocates for using “person first language” (such as a person who is blind) rather than “disability first language” (such as a blind person). Either way is fine with me. I don’t believe that simply mentioning my disability first makes me any less of a person. The word “disability” itself makes some people uneasy. “A person with different abilities” seems to be a favourite. I am not offended by this word either. I call a spade a spade and don’t feel the need to use euphemistic language.

Thirdly, I am not okay with some language that tends to be used by charities in the disability space. “So and so suffers from blindness” is an example of a phrase that is often bandied about. This sort of emotive language is used to fetch a donation dollar, but it is not constructive.

These charities are also often the worst offenders for sharing “inspiration porn” as we often call it. Most of us hate it when people think we are inspirational just for completing mundane tasks. This is a fairly deep topic in itself that I won’t go into any further in this post, but I think the message that these charities send does nothing to overcome these underlying assumptions. In fact, they just reinforce the idea that every day is a struggle for us and undermines how capable we are.

Let’s delve into the idea of “suffering with blindness” a little deeper. For me personally, I don’t think being blind is all that bad. I certainly wouldn’t say that I was “suffering”. Sure, it might be a slight inconvenience now and then, but I am so used to it these days.

I do acknowledge though that I am lucky because I have been blind since such a young age (age three) so I can’t remember ever having full vision. This is all I have ever known. That means I haven’t had to go through the grief of having sight and losing it gradually due to a degenerative condition or suddenly in an accident for example.

I haven’t had to adjust to a totally new way of life. I haven’t had to adjust to learning braille, to using assistive technology, to engaging my other senses, anything like that. I haven’t had to deal with the loss of my primary sense. For that reason, I can’t possibly pretend to know how others feel about this.

But if a miracle cure were discovered suddenly and a doctor offered to restore my sight tomorrow, I genuinely don’t think I would accept it. Sure, it’s easy to say that when it’s a hypothetical scenario. If it were a reality, I would definitely have to give it some serious thought. It would be a hell of a decision to make. But from my perspective here and now, I wouldn’t want my sight restored. This is me, and I am happy with who I am.

Let me finish by returning to that fine print again. Please remember that the experiences and opinions I have shared here are only mine. While I don’t mind calling myself a “blind person”, others may find that offensive. While I am confident using an escalator, others may not feel comfortable doing so and some guide dogs can’t use escalators. So on and so forth.

As a result, the take-home message from this post is two-pronged. Firstly, don’t be afraid to ask us questions. Ask us which language we prefer, if we would prefer to take the elevator or the escalator, what assistance we require and the best way to provide that assistance, etc.

Secondly, try to be aware of any unconscious bias that you or those around you may have. And more importantly, try to challenge those beliefs if you do become aware of them. It is these unconscious biases that undermine the abilities of people with disability. Thank you for sticking with me, and for navigating this minefield together.

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