Sofia: Talking about your visual disability
How do you tell others that you are visually impaired? I talk about my own experience and my strategies when it comes to informing others about your disability.
When I went to primary school, we occasionally had new people join our class. Whenever this happened, my mother would visit school at the beginning of term to tell the class about my visual impairment. She'd explain what it meant, and let the other children look through a folded plastic pocket in order for them to understand how much I could see. I think both the teachers and the students found this very useful - it didn't leave them guessing why that one girl had to lean so close to things in order to see them.
Moving on to when I was 13, my class was merged with a parallel year group. My mother and I decided that I should do the introduction on my own this time. It is the first time I specifically remember telling others about my visual impairment (I must have talked to others in the past, but I don't remember it as clearly as this). I was a bit nervous; I didn't know how the other students would react. I was quite self-conscious about not being able to see well and was a bit scared that they would find me weird or too forward about it. However, it felt like an important thing to do - it was, after all, something I would have to do many times in the future.
I can't remember much of what I said during my presentation - I must have gone over the same basics as my mum did - but I do remember that I decided to joke about the fact that I have to come very close to things in order to see them. The joke went along the lines of: "I will have to get very close to things in order to be able to see them properly, so if I ever get very close to you, it's not because I'm trying to flirt and get up and cosy." The other students laughed at this, which made me feel better about the whole thing. In a sense, this was a defining moment for me, because it showed me that I didn't have to be afraid of speaking about my disability. I learned that in fact, speaking about my disability might even be appreciated.
In this post, I'll explore two related but quite different aspects of talking about disability. Firstly, we have the professional aspect where you have to inform the university or an employer about your disability. Secondly, we have the private aspect - that is, how do you tell new acquaintances and friends that you are visually impaired? And how do you do it in such a way that the other people feel comfortable helping you or asking questions? Remember that these are just my opinions, and the topics I'll touch on are quite specific to low-vision people. Still, I hope that this post will provide a basis for reflection on the topic for everyone.
It's difficult to talk about disabilities
It is, hands down, quite difficult to talk about disabilities, whether it's your own or not. This goes for both disabled and abled people. For the disabled person, there might be a number of reasons for this. The disabled person might experience negative feelings associated with the disability, such as be fear of being judged by others. They might feel discomfort with discussing what many see as a weakness or liability, not mentioning the complicated mixture of feelings that comes with having to ask someone (a stranger perhaps) for help. Sometimes the disability is associated with a traumatic personal event, such as an accident that caused the disability. It doesn't help that there's a social stigma that surrounds anything disability-related, as well as the risk of discrimination or rejection because of the disability. Negative experiences, such as being bullied, patronised or just misunderstood by others in the past don't exactly help either.
I imagine that abled people must also find it difficult to talk about disabilities (I would fall into that category when discussing disabilities that don't have to do with eyesight). The lack of positive representation of disable people in public life and on TV and literature means that the public in general is very ignorant of the issues faced by disabled people. This makes it difficult for abled people to confidently engage with a disabled person. For example, when meeting a disabled person, do you offer to help them if you see them struggle with something? Or do you ignore it, so as to not draw attention to it? Can you ask the disabled person how they got their disability? Is it appropriate to ask about the inner workings of the disability, as in my case about the biological mechanism that causes albinism? The answer to any of the questions above does of course depends on the context. Perhaps more importantly, it depends on how the question is asked in the first place. Natural curiosity is perfectly understandable, but sometimes it crosses the line where it becomes less about trying to understand the disabled person and more about satisfying this curiosity. It's hard to put the finger on when this happens, but many disabled people know the feeling. My point is that this, and the general lack of information about disabilities can make people feel self-conscious around a disabled person. This is not the fault of the disabled person, nor the abled person, because we cannot expect everyone in society to educate themselves about every strange variety out there. So it falls to the disabled people in question to communicate their condition, but it can understandably be tiring to be a constant ambassador for the group in question.
So, we've established that it's hard to talk about disabilities. However, I do think it's important to try and overcome any negative feelings about the disability, as firstly they are not justified, and secondly because it will make both you and the people around you feel more relaxed. If they sense that you are comfortable talking about the disability, they will feel comfortable asking you questions. That in turn will lead to a better understanding with others of what things you can't see or do, and also on the other hand what you can do. Openly talking about disabilities, even though it's hard, will promote understanding and inclusion. After all, nothing dispels stereotypes more than personal contact.
So let's see how a low-vision person can talk about their disability. Or, more precisely, I'll tell you what I do, and then you can make up your own mind. As I said before, there are no right answers to any of these questions, and the preferred approach will differ from person to person, and from disability to disability Here I will specifically talk about these questions from the perspective of a low-vision VIP.
You can't tell that I'm short-sighted
First, however, let me talk briefly of some unique things that come with being low-vision, as opposed to being nearly or fully blind. There's an amusing story that comes to mind. My sister (who has the same visual impairment as me) recently went to the airport and requested assistance. When they came to collect her from the plane, they initially thought that she was the grandchild to some of the other older people there who also needed help. This is the tricky thing about being low-vision: It's not immediately obvious to others that a low-vision person has an actual disability. Most of the time, we enjoy mobility and independence to the degree that the disability only becomes obvious when we hold something very close to our eyes.
This is sometimes nice. We don't always have to explain that we're actually properly disabled which allows us to actively choose the time and location of disclosure. The disadvantage is that fully sighted people forget we are disabled. There are no obvious visual clues to remind them. This was mainly a problem in school, where my teachers would often forget about my disability. As a result, they would, for example, forget to hand me a paper copy of the overhead slide (yup, this was pre-PowerPoint, kids) or wouldn't read out loud what they wrote on the board. As a child, I found it very difficult to constantly remind them. I didn't want to draw attention to myself, and I didn't want to hold up the class. I was quite self-conscious about my bad vision. To parents, I can only recommend to try and help your child build the self-confidence and sense of purpose that can help in these situations. Their disability should not hold them back from demanding full participation in their education, even if that is difficult.
Then again, as I said above, a low-vision disability is very easy to explain, compared to the complexities surrounding mental health issues or other non-visible disabilities, such as learning disabilities. The challenges faced by those groups are again quite different.
Talking to your university
This is a website for visually impaired people at university, so let's see how you can tell universities about your disability. As mentioned in many previous posts, both by me and others (see for example this and this), you should contact the university disability adviser as soon as soon as you apply. They are there to support you and the earlier they know about your disability, the more time you have to sort things out together.
When you speak to the university, it's important to remember that the disability support staff will not be trained to handle the very specific version of your disability. While sight-loss can appear fairly straight-forward, especially compared to challenges faced by those with learning disabilities or mental illness, it's important to remember that there is a huge variety of visual impairments. There is, for example, a significant difference between the kind of support someone who sees 15% like myself and someone who sees 5% needs. Range of vision is another factor which greatly affects the VIP in question: low vision but a large field-of-vision is more manageable than full sight with only a very narrow field-of-vision.
So ultimately, it will be down to you to describe what your requirements are. You will need to focus on the concrete details. A medical documents where the exact specifications of your visual impairment are detailed can be a good starting point, but as discussed above a number will be a poor representation for what kind of support you need. This about concrete examples so that the disability staff can help you. For example, how did you follow along in class in school? Did you just follow by listening? What if you can't do that at university? How did you manage in labs and on excursions?
The key thing to remember is that the disability officer is there to listen to you and figure out what help you need. This next bit might sound obvious, but I made sure to always be very polite when talking to them, and to always come prepared to meetings (I thought about what I wanted to say, etc.), and I made sur sure to communicate with all parties concerned. They included the head of undergraduate studies, the disability office and the main undergraduate physics administrator throughout my degree. It definitely helps to build rapport with all concerned parties - that way they will help you out when it matters, like when exams are coming up.
One more thing I'd like to mention are the lecturers. Because I was using a camera during lectures, I worried that the lecturers would find this quite intrusive and wanted to let them know about my disability. I therefore set out to write a letter to them, which I asked the administrator to send out at the beginning of each term. I will publish the letter on this blog shortly, but I think it worked quite well and would recommend that every VIP does this. Firstly, I think it removed any uncertainty the lecturers might have had about the camera. Secondly, it gave me an advantage in that they would remember me, which worked well when I had questions. Lastly,
And just in case you're wondering exactly how to contact the university, I'd recommend something along the following lines: "Dear Sir/Madam, My name is Sofia, I'm about to start the physics undergraduate programme at Imperial College this autumn. I wanted to contact you regarding the fact that I have a visual impairment. I was wondering if we could arrange to meet before the beginning of term to discuss what kind of support Imperial can offer me? Best regards."
Should you disclose your disability when applying for a job?
While this is slightly off-topic, the topic itself doesn't fill an entire blog post on its own. So, when you've finished your university degree, you might want to apply for a job. When you do so, should you tell the employer about your disability? For low-vision people, this again becomes a personal choice as it might not be obvious during the interview that you have a visual disability.
I will here repeat what an industry leader said to me during a career day. If the job you apply for is similar to your university degree, don't bother writing that you're disabled in your cover letter or your CV. By completing the degree, you've clearly shown that you are capable of doing such a job with some reasonable adjustments. You might want to inform your employer after you've been given the job, but at the interview stage there is no need. And while discrimination shouldn't occur, we don't live in a perfect world and so not mentioning your disability can help keep you safe here.
If you feel that you want to disclose it early or if you don't have this choice, one thing you can do, however, is to turn your visual impairment into an advantage in your cover letter. The organisational capabilities and creativity required by a disabled person to complete university studies or perform a job are often quite impressive. I know blind people who emphasize this on their CV, and they have the additional advantage of having a disability perspective. For example, any company that perform a service should take disabled people into account, and so having a natural expert on the team will help them.
How to talk to friends about your disability
Talking to university staff is in a way easier since the context for the conversation is quite clear and you will have already disclosed your disability in the application or an email. I find telling new friends or acquaintances quite hard in comparison. I think I'm getting better at it, or at least, I'm getting more confident.
There are two questions to be answered here, which again are quite specific to low-vision people: When do you say it and how do you explain the extent of your vision? Let's start with the first question, when to say something. I usually leave this until the context actually requires it. For example, if I'm out with people and we are ordering food, I might ask them what a tea costs, if I can't read it from afar. I then usually say something like: I'm really, really short-sighted, my glasses don't fully correct for it. When the time is right (and this can be quite hard to time, but in connection to not being able to read something is fine), I then mention something that's quite crucial for any continued friendship, namely that I will not be able to spot them from afar. I tell that if I don't wave back, it is not because I am ignoring them, but simply because I haven't seen them. The other day, a colleague said he'd been waving to me from afar in the gym, only for me to just stroll past. Once I explained the situation to him, he was very understanding, but said he had found it strange at the time. Sometimes people joke that this sounds really useful - I basically have an excuse to ignore people I don't want to talk to, which I suppose is useful (not that I would intentionally do that).
In general, it's sometimes hard to judge when it is appropriate to bring it up. If you have met someone who you want to stay in touch with, or someone you would like to form a long-term friendship with, then it's worth it telling them as quickly as possible. It will just get weird if you keep acting really short-sighted without explaining why, and you will have to explain why you ignored them that one time. It's hard, but don't be afraid to tell your friends about your disability. Do it gently, without expectations, and joke about it if you can. For example, whenever people talk about getting their driving licence, and it becomes obvious that I can't have one, I joke that they definitely wouldn't want me to drive. Humour can become a great tool - it will show people around that you're not afraid to talk about your disability, and as a result, they will feel more comfortable. It can be hard to do, and it requires a certain self-distance.
The power of words
In the above, you might have noticed that most of my verbal explanations involve 'short-sighted', and that I rarely use the phrase 'visually impaired'. There are two reasons for this. Firstly, I am very consciously employing a strategy where I am not using any negative words. 'Visual impairment' and any of its translations into languages that I speak sounds very harsh to me, almost like my eyes have been damaged or injured, which for me is not the case. And while the word 'disability' should not be a negative thing in itself, it is sadly associated with quite a few negative things, such as lack of independence and inability. Ideally, we should not associate the word 'disability' with these negative contexts. Many disabled people are able to function independently in the right environment. However, by choosing the words I use to describe my visual impairment, I can control the impression of the other person to some degree. Ultimately, I'd rather they remember more interesting details about me, for example that I like physics and music, than the fact that I'm visually impaired.
Secondly, I actually find it easier to convey my needs by saying that I am very short-sighted. In my case, saying that I am visually impaired lead people to think that it's worse than it actually is. For example, I once turned up at an event to play the piano, and the host promptly took my arm and led me through the entire establishment. I found this rather strange because I'm perfectly able to walk on my own, but he had probably been told that I was visually impaired and would need a hand (of course no hard feelings there, it happens). Most people know what it's like to be short-sighted, however, and they will be able to adapt to my needs when I use that expression. I just have to emphasize that I'm really, really short-sighted.
An aside on light-sensitivity
My visual impairment is caused by albinism, which has another side to it: light sensitivity. I almost find it harder talk about this aspect of my disability because it can be even more socially restrictive than the visual impairment. This is because it actively prevents me from taking part in certain activities, such as going swimming outside in the middle of the day, or sitting with a group of friends in the sunny park.
However, as with everything, there are ways to figure this out. When people are more keen on sunbathing, I compromise with my friends by finding a patch of grass that is partially shaded. That way, they can sit in the sun while I sit in the shade. Usually, people are understanding, but the sunlight is quite alluring (especially in colder such as Sweden or the UK), and so it has happened that I just had to talk away from a group of friends. Usually people are understanding of this, and I do my part by preparing with plenty of sunscreen and long-sleeved shirts. It's sometimes hard to call it when I need to give up and go inside, but I try and err on the side that doesn't involve skin-cancer. I'm sure you understand why.
I hope that these thoughts might be helpful to you, and that they will encourage you to reflect over the way you talk about your disability, or the way you approach others who are disabled. Please feel free to comment below with your own experiences and suggestions.