Disability can mean so many different things for so many people. Disability is such a far-reaching umbrella term, as there are so many different types of disabilities — and implications of that. You have disabilities that are physical, you have disabilities that affect a person neurologically or cognitively. That is not an exhaustive list. There are so many different branches of the umbrella term of disability, and that is something that needs to be taken into consideration when talking about it.
For the purpose of this blog post, I'm going to focus on physical disability, as that is how disability primarily affects me. In my experience, having a physical disability allows people to think they can judge you before you have even spoken or interacted with said person. So, they make that judgement through the disability, and that impacts how they interact with you, or perceive you as a person. Even when you do speak for yourself in an informed way, you can sometimes see a level of uncertainty in their face (not everyone does this, and I do understand the uncertainty because some people cannot communicate for themselves, and people shouldn't be expected to be mind-readers). As you can see, there can be a lot of assumptions in terms of what you can and can't do — regardless of whether or not you have already told them what help you will need, and what help you do not need.
Growing up with a disability — although I never forget that I have a disability — I do forget that it is ‘different’, because it is what I've always known. And so, I've just had to grow up in life learning how to do life as a disabled person. Whereas, every day I'm coming across able-bodied people who see me as an ‘abnormality’ (for want of a better word), and they're not entirely sure how to interact with me. It is my hope that within a few seconds of interacting with me, people feel more comfortable and able to ask the right questions. I also assess the situation and engage that conversation to a certain extent. I have to tell them what help I need, and how they can interact with me, and how they can help me — just to make them feel more comfortable. But then, in feeling as though I have to make people feel comfortable, it makes me feel like a burden. I have to consider what they are worried about and what they're concerned about. If they are unsure how to address the subject, I have to broach the subject based on their facial expressions, or their physical interactions with me.
I am conscious that I've made it seem like people generally are terrible to disabled people. Not everyone is, but that doesn't take away from the fact that these processes have to be considered in every intersection, largely because of a select few people. Besides, this discussion is a good opportunity to educate people.
I am physically disabled, but cognitively capable. There can be the assumption that, because you're physically disabled, you therefore cannot be cognitively capable. It may or may not come to it as a surprise to you, but it is the reality of being disabled. For example, if I am by myself in a public space, then people have to speak to me in order to communicate with me. I can see sometimes that people are nervous just before they begin to speak to me, but once I have responded to them they begin to relax, as they realise I can communicate my ideas, my needs, and my wants as clearly as the next person (if not more — if I may see him myself). However, if I'm with another person, and I am in my wheelchair, they tend to automatically want to speak to the other person. I understand where this comes from, in terms of not knowing how to approach the disabled person, and not wanting to get it wrong. So, people might just not want to do it at all, so they take the easy option of talking to the other person.
In my experience, I have literally had to interject and start speaking for myself. Then the dynamic changes. While it is good I can do this for myself, it is also sad that I've had to learn this under such circumstances; an aspect of my life that I'm constantly having to prove myself, even in these very small interactions. Not to mention the fact that not everyone can, or is willing, to speak for themselves.
I may be disabled, but I still want to live a life. Just because I'm disabled, it does not mean that, therefore, I do not have a life to be lived. It may be an assumption that I'm imposing on myself, but I do get the impression that other people see disabled people as living a life as an extension of another person or group of people; that they are unable to live a life that is their own. However, as I've alluded to above, having a disability can look different to so many people. People with the same disability have a completely different experience. The same disability can affect people so very differently.
Following on from the idea of wanting to live my own life and develop as a person independently, I don't want to be treated differently in the sense that I want to be treated equally. I want to be given the same opportunities; I want to be communicated with in a way that is appropriate for me. However, there is a slight caveat for that, in the sense that I will need extra assistance. I may need adaptations to be implemented. But In order for those adaptations to be made, there needs to be conversations. I think a lot of people are hesitant to at least initiate the conversation. So it falls upon me to make that extra effort (which, of course, I don't mind doing). Meaning to say that I don't want to be treated differently in the sense that my disability makes me seem as though I'm not like any other person — or lesser. But I also need that extra bit of help in certain situations.
It's interesting, also, that I find that — because I am ‘cognitively level’ with other people — they seem to sometimes forget that I need the extra assistance.
On the one hand, this is really endearing because they see me as my whole being — rather than seeing the wheelchair and thinking ‘oh, yes, he's disabled’. It does break my heart to think that I have to reiterate that, yes, to a certain extent I can get ‘here’, but after this point I do need help. It also breaks my heart seeing some people feeling guilty that they've misread the situation, or that they didn't know this beforehand — or hadn't quite registered the fact that a disability is called a disability because It, at the very least, makes things much harder to do. For a lot of people, a lot of things need adapting. Even if that is people's mindsets and perceptions. Everything experienced in life is so unique in a way that even other disabled people might not understand. As I alluded to earlier, two people with the same disability will experience it differently. Even if they were to have exactly the same disability, with the exact same conditions of that disability, they would both have different interpretations of their existence.
I understand that we're all living for the first time. We can't get everything right. We have to, again, have this open line of communication and discussion around who needs what help. I do get the impression, sometimes, that people don't want to start these conversations in fear of insulting someone. I know, from my side of things, I would prefer that somebody asks if I need some help. I would prefer they ask for a discussion about a topic, if they're unsure about what to do. We are all living for the first time, and yet everything we are taught must be applied differently. This isn't just the case for people with disabilities, this is the case for everybody.
For example, we are all taught to write (for the most part), and yet everybody writes differently. Everybody has a different way of processing the idea of writing. Everybody enjoys writing to a greater or lesser extent.
If we take that analogy and apply it to having a disability, we are still trying to live life, but things need to be adapted, things need to be considered. In some cases, I may look like I'm struggling, but that is simply the way that I do things. A good example would be if I have my rucksack on the back of my wheelchair. In order to do that, I have to twist around, and take The straps off the wheelchair handles individually. In order to do that, I do have to force myself into quite an angle. To an able-bodied person — or anyone else, really — it can look as though I am struggling. To be honest, to a certain extent, I am. But it is just part of my existence. Life is not without its struggle. And it certainly is not the first time that I've taken my rucksack off the back of my wheelchair.
Earlier, I touched on the assumptions of other people, and feeling as though I need to prove myself as a result. Through these perceptions that other people have I feel underestimated. It further compounds on the idea that I feel as though I have to prove myself.
It is a natural part of life to want to do the right thing and then feel as though you have put your foot in it. We’ve all said or done the wrong thing at one point or another. Nobody can get it right all the time. I know that I certainly find myself in situations where I'm not entirely sure what the right thing to do is. In those situations I ask questions with sensitivity to make it apparent that I'm not quite sure whether my or may not be insulting — but it certainly is not intended to be insulting. This gives the other person the awareness that you're not trying to hurt their feelings, but you are literally trying to work at how best to interact with them and communicate. In many ways, it shows your personality (or lack thereof). It can almost break the ice, if you like.
For me, writing is the way that I can truly express myself. Everything that needs to be said can be said without being interrupted. In that sense, readers get the whole thought, rather than part of it. With the writing giving the writer the space to say what they think — and the reader has the opportunity to interpret it however they like. But, before that, the writer has the opportunity to say what they need to say.
When I started showing my writing to other people they were shocked that I could write ‘so well’. Mostly because it was something that people had never seen. It was a side that I hadn't fully appreciated myself. I knew that I could write an effective sentence or paragraph, but I didn't really appreciate that it could be turned into something that was extremely useful; a fantastic opportunity — and a potential income.
Through writing, I can explore what my physical body limits. I can show who I am without the visible body being a prerequisite. People see me and my writing, rather than my disability. Of course, after that they see the words and then the wheelchair. The wheelchair coming second allows the mind to establish the fact that the wheelchair becomes secondary to who I am as a person. A wheelchair is simply a tool to allow me to navigate the world. It is certainly part of who I am, and how I exist in the world, but is not everything about me.
Writing also allows for a level playing field, because disability is not the defining factor of anything within writing. In fact, the different life experiences can be extremely useful.
Now, I do understand that saying that disability is not a defining factor within writing opens up the door to people considering ‘what if people can't write because of their disability?’ I'm not dismissing that. Our ability to explore thoughts and ideas is not necessarily hindered by whether or not we can physically write. Also, in the twenty-first century there is a lot of assistive technology, such as voice-to-text dictation and other services, that allow you to bypass the physical writing aspect. There are also other ways of expressing your thoughts and feelings, such as painting or verbal debate
There is also the consideration that not everybody likes writing; not everybody values it as a skill. If it is something that you feel you're not good at, or you simply cannot do for whatever reason it should not influence your value as a human being. It does not mean you can't do anything at all. Everybody has their strengths and weaknesses, is what I mean to say.
Another interesting point is that there are many different types of writing, just as there are many different types of disabilities. So, in that sense, we could use the idea of writing as an analogy for disability. Within writing there are many different genres, just as there are types of disability, and within the different genres there are different sub-genres. Everyone interprets these differently, and produces different types of work. In terms of disability the ‘types of work’ could manifest as life experiences and how we interpret those. So, writing is definitely an outlet for me because I'm able to explore the physical world in a way that I can't within my body. I'm creating characters, for example, with my emotions and my experiences reflected through them, but not all these characters have disabilities. In fact, I don't think I've actually written a disabled character yet.
As you can hopefully see, writing is a very freeing experience when you feel restricted by your physical body. There is no restriction on your physical ability, as long as you're able to communicate ideas and thoughts in some way. The experience of being disabled adds an extra layer, if you like, to those ideas and thoughts. These may, or may not, be more insightful compared to somebody who has not experienced disability in some form.
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