Opinion: Seeing me for me, not my disability

Written by Joel Bell in 2019, during his time as a CCS Disability Action Communications and Marketing intern.

I live with a genetic eye condition that has only started to change my life in the last couple of years. It has been a big change going from having sight, being able to drive and having more independence, compared to now giving up driving and relying on public transport. Learning to ask for help can be an adjustment, but I don’t let disability define who I am.

One of the biggest things is that despite the huge variety of people who have a vast range of impairments, people still make the assumption that someone who is disabled has to look a certain way or it needs to be visible for people to accept that someone is disabled. I find this irritating because I am one of those people whose impairment is not visible, so I feel further education is needed to increase awareness of the differences.

The condition I have is called Retinitis Pigmentosa. It is caused by a genetic eye condition and starts when you are young with the loss of your night vision. Then over time, your vision deteriorates depending on the type of RP you have. Currently I have limited side vision and full front vision with less clarity, so technically I am described as having ‘low vision’.

I don’t want to be gloom and doom, but instead prefer to enjoy my life based on what I can do, rather than what I can’t. This is why it’s fascinating how some people assume all people who use visual aid canes like I do are blind, but this is of course not the case. ‘Blind’ means you have no vision or can only see some light or shadows, where low vision – also known as vision impairment – means even with corrective glasses, contact lenses and other visual aids you have problems seeing but still have some sight, depending on your impairment.

I do not fit the ‘norm’ of a blind person, so I understand why people get confused when they see me using my cane, then stopping to read my phone. The reason depends on the light or lack of light, which can influence how well I see. Friends and family have experienced abuse, but this hasn’t happened to me. I feel my approach is to educate, ask questions and engage with the public. I understand some people are not interested and voice their opinion, but I do find it’s down to the individual’s willingness to want to understand.

My friends are wonderful, but they often want to do things for me that I would prefer to do for myself. I need to remind them not to take my arm, not to reach over and open the custard for me when I am taking a bit longer to do so. It’s hard to tell people who care about you not to help, but my independence is very precious to me. One of the biggest things I have noticed with my reduced vision – apart from how tricky those pour spouts are to open on custard containers – is how important it is to educate people who care about me in how to interact, and understand how taking over can make me feel less of a person.

The same applies to being out in the community. Living my life has new challenges with simple things that other people take for granted. I can remember using the local buses in Tauranga and the driver rudely suggesting I was faking, because he had seen me walking around during the day without a cane. Another time a driver said, “Are you sure you are on the right bus?” Or “Can you not read the sign?” However, I wasn’t using my visual cane to as an indicator because I used the same bus every day and felt I didn’t need it. I responded to the drivers letting them know that I have a vision impairment, explained briefly about my condition and what I could see to help both drivers’ understanding.

I did notice explaining my condition made no difference, as I saw the same drivers over the next couple of weeks and encountered the same attitude. In response, I found myself saying sarcastic comments such as “I’m blind, not stupid.” I understand this is not the ideal response to people, but sometimes I get frustrated and this seems to be the only way I can get through to them – I do not enjoy treating people in this way. These drivers made me feel angry because I should not have to explain myself to anyone, and in this case it made no difference because the drivers were not interested in listening or learning.

Another experience was with a Tauranga taxi driver who tried to take me on a ‘scenic tour’ home to make more money out of me. What many people forget is that disabled people learn different strategies, such as remembering streets to adapt. When I realised what he was doing I said, “Why are you going this way? This is the long way home.” He responded to me by saying “How do you know where we are? You’re blind.”

I said, “I have a vision impairment, so can still see.” I then informed him I would only be paying what I knew the fare was worth. Let’s just say this started an argument where I stood my ground and said, “I will report you for trying to rip me off” and to “get stuffed!” I do not usually talk this way, but I don’t like being taken advantage of.

There have been instances where I have experienced kind people who have been really helpful, too. Examples would be bus drivers asking me where I was going and stopping for me at the stop, so I didn’t have to think about where the stop is, which can be stressful when you cannot see. Another example would be a café staff member coming around to read the cabinet food and the menu to me, which I really appreciated as sometimes the lighting isn’t the best in some places so it really helps.

My work life has changed since losing sight because in the past, I have been able to hide my impairment from employers, as well as friends and some family. Until one day it caught up with me, which encouraged me to be more open to people about my vison, including learning to ask for help and support. However, at the time I had no idea of how to cope with this change, or how to discuss this with my management. Even now, I am looking for work and feel anxious disclosing my impairment because of the fear of being rejected for it. But despite this, I know if I am employed by a supportive organisation that I am open and honest with, at least I can get the right support to suit my needs.

The disappointing thing for me, being a career driven individual who wants to advance into management, is the stigma I feel exists around disabled people only being judged as capable of doing certain jobs. This is obviously not true and needs to change through people’s increased awareness of the equal, and sometimes unique, capabilities of disabled people. We all deserve to be given equal opportunity to live the life we choose – just like our non-disabled counterparts.