Welcome back to my #DisabilityQ&A series.
Today’s interview is brought to you by Sean, we met on Twitter and I asked if he would like to participate, thankfully he said yes 🙂 his no nonsense approach with his eloquent writing echoes everything I’ve come across in the blind community.
Tell me about yourself:
My name is Sean Randall. I’m 28 years old and I live in a village just outside of Worcester in England with my fiancée, 5-year-old daughter and Guide Dog.
What is your job?
I am an accessibility and technology specialist at a school for the blind and visually impaired. My workday is split pretty fifty-fifty between working with a student and his or her technology needs, and providing accessibility support for the college as a whole.
When teaching the students we can be working on practicing typing skills to writing computer software or anything in between. Students bring me any technology they want to learn to use better, and together we explore all the options and find techniques for improving their access. It’s a great feeling when a student who has never used a computer before can walk into the classroom and reply to her emails before moving on to her next task without any input from me at all. We’re just at the start of a new school year, so there’ll be a new intake of students to get to grips with, and I was pleased to learn that over the summer, all our former students got their places at university or ended up somewhere they were happy (one of my best pupils is now working with the BBC!)
The other half of my job is not as immediately gratifying but it *is* important. I manage our school network and technology from an accessibility point of view. This can involve anything from making sure new software the college wants to obtain is accessible to all staff or students, right down to deciding on specific manufacturers and suppliers for specialist devices (such as Braille Displays. We also run a lot of outreach events, where teachers and support staff from all over the country come to see what we do, and I answer lots of questions and help find paths through the education system for young people throughout the UK during these sessions. I get questions from young blind people themselves, their teachers, parents and carers, and even sometimes their friends. It’s a hugely rewarding job I do, with such a variety of tasks on any given day that I’m never at a loss for something to do.
What hobbies do you have?
I’m a huge reader. If I ever have 5 minutes to myself you’ll find me sneaking a few pages of my current novel: I enjoy science fiction and fantasy books in the main, although a good contemporary fiction novel or legal thriller sometimes hooks me. I follow technological, political, disability and accessibility news very closely, mainly because it’s the sort to impact me and my family and job the most, so I don’t read much non-fiction for pleasure because I like my books to whisk me off to somewhere pleasant for a while!
I also enjoy horror films, long walks, country music, goalball and good food and spend some of my time volunteering to help people with their technology over the phone or in their own homes if they need it. I dabble in software development too, my fiancée is quite partial to having a pet programmer who can whip up little computer programs to do her bidding.
What is the medical reason you have a disability?
I was born over 12 weeks prematurely, so my eyes weren’t fully developed. I needed Oxygen to survive, and that further damaged my retinas. I weighed less than a bag of sugar at birth. People often ask me if it would’ve been sensible to try without the Oxygen to keep my eyes intact, and I always tell them the same thing. Without Oxygen I would die. With damaged retinas, I simply need to be a little more creative to live the kind of life I want!
Have you had your Visual impairment / disability from birth?
Which terminology do you prefer: Partially Sighted, Visually Impaired,Sight Impaired, Severely Sight Impaired or Blind?
Blind. Even though I don’t live in pitch blackness – I can see light sources in one eye – I don’t have any “useful vision”. Blind is a simple word with a simple meaning and it makes sense for me to use it to describe myself, and it has the added benefit of being true!
Do you have a cane, Guide Dog or neither?
A guide dog. I took the step of getting him when my daughter was born, because I knew we’d need to go places. True enough, the walks to nursery, the bakers, butchers and shops around town were made much more efficient and pleasant with him and he is a faithful companion and family pet when he’s not working. I was very against getting a guide dog until I had a pressing need, and the village where we live at present is probably a little too small for him really (I find myself walking him for the sake of it more than work). SO even though he’s loved and a huge part of the family I would have to think carefully about the need before replacing him when he retires in a few years.
If you could extinguish your disability, would you? – If not, please explain why.
If you’d asked me this question 5 years ago I would’ve been emphatic and firm and said no. I was happy in my skin with a quality of life I was content with doing what I wanted to be doing. All this changed when my daughter came along. We have a great time, but there are things having vision would improve: getting around is probably the biggest one, the freedom to hop into the car and drive off somewhere is strong. Also just being able to know where we are by looking, and to see what my daughter is up to without needing to keep an ear or a hand on her would be a big incentive for me to gain any vision I could.
For those who do not know much about your VI what can you see?
Just light. It’s enough to tell where the sun or brighter sources (windows, larger lamps etc) are coming from. I do get burned-out quickly, which is hard to explain, but for instance if I was standing in a room and you turned the light on and off a few times quickly my eye would stop processing things and I wouldn’t be able to determine if it was on or not. Sometimes I get random flashes of light that aren’t there, which can be confusing, usually when I’m very tired or unwell.
How has your disability effected you?
My disability has shaped my life, in many ways. Socially it’s made me very keen to help others, and I enjoy a good level of engagement within the blind community (I’m active on social media, mailing lists and so on). I don’t have many sighted friends, but those I do have I get on well with.
Physically, I don’t know what impact it’s had. I’m not particularly coordinated or skilled with my hands and fingers, perhaps that would’ve been different if I wasn’t disabled. I am quite fit – I can run a fair distance and spent the first few years of my daughter’s life carrying her around on my back.
Mentally, being blind has made me realise that if I want something, asking for it has to be done the right way. So many of my friends have asked for “help”, without being specific enough that the person in question knows what to do. For example when our daughter started school, it wouldn’t have worked if we’d just said “we want letters in an accessible format: how on earth is the school receptionist supposed to know what we find accessible? The spectrum of visual impairment goes from needing print a little larger than average to deaf-blind people reading Braille and nothing else, and blind people themselves can often do things in a number of ways. “Can you email us letters?” is what we said, and we get them that way and everyone is happy. I think the core lesson here is that you as a person with a disability need to have the awareness of what’s out there to help you and the ability or advocacy to communicate that where appropriate. This is where the sociability comes in, being part of the blind community on social media or otherwise gives you a great resource when you’ve got questions.
Do you think your disability has made you who you are today?
Certainly it’s made me do what I do. I can’t imagine I’d work in the disability sector if I didn’t have a disability myself. I’d like to think it’s made me a more tolerant, caring and understanding person. It’s hard to separate me from my disability because it’s always been a part of me; if I’d lived nearly 30 years with working eyes then maybe I could answer this one properly!
*Please give a positive example of how this has done soâ€¦ Example: Not judging people by their appearance
Although it mightn’t appear positive to begin with, I think the one thing my disability has done for me is to not take any excuses. There’s no reason why someone with my eye condition and nothing else wrong with them couldn’t learn to do the things I do. Not the things I’ve chosen to learn (like computer programming), but the day-to-day tasks of maintaining a house, paying the bills, helping with homework and going to and from my job are all things that society expects of me, that I expect of myself and that I would expect of anyone in a similar situation.
Is there a particular question you get asked often because of your disability? If so, please explain below.
I think the most widespread question is sort of an umbrella “how do you manage?” and of course that depends on what you’re doing at the time. The average sighted person tries to imagine themselves doing the task in question with their eyes shut (making a cup of tea, sending an email, changing a nappy, chopping vegetables) and of course to them it’s a scary and worrying prospect. They almost invariably decide they couldn’t do it, and so they assume I have some amazing secret that enables me to work on their level. I’m as guilty as anybody of this – I’ve met people with one arm or missing fingers, or who can’t hear or speak, and of course I find myself wondering how I’d cope in that situation.
There’s no easy answer, either. And that’s because we adapt in hundreds of little ways to thousands of different tasks whether we’re disabled or not. There’s no magic solution, and I think people leave perplexed because they’re expecting something to make up for my lack of vision when in reality, I simply do things differently sometimes because I’ve never had it.
What are the positives of having a disability?
Learning that things are rarely impossible. It’s probably the best time in history to be disabled because of the profusion of technology. I can work, bank, shop, play, study, interact and absorb online with, in nine cases out of ten, very moderate adaptations to the way anyone else might do it.
One of the best examples is books. I used to buy second-hand paperback books from charity shops because I had a huge beast of a scanner, which would scan one page at a time into the computer so I could read the book. I’d buy old tatty copies so I could chop them up and feed the pages into the system, and spend about a month correcting the scanned text to something readable. Seriously, weeks on a single book. Today? I just buy the Kindle edition. I cannot express the glee that it gives me to know that in less time than I could walk to the shop and pick up a print copy of the book I can be reading it curled up in my dressing gown, lounging in the sun, or heading off somewhere on the train. And the point here, of course, is that the same holds true for you if you are sighted. The difference is in how we absorb the material, not how we get it. And that’s the key problem historically and one where the gap is slowly but steadily narrowing.
What are the negatives of having a disability?
I have two big downsides to my disability. First, I can’t live as spontaneously as I’d like. If I wanted to go on holiday, drive to a random restaurant for a meal, go and see a film or treat my fiancée to a day out I have to plan more than most do. I need to look at audio-description in the cinema, menus at restaurants, travel assistance for trains or aircraft and guidance to or around unfamiliar areas. None of the things are impossible, but all of them are less practical. Perhaps not all of them are completely necessary (you can argue we can watch a movie without the audio-description) but why not use it if it’s there? I don’t see this ever going away completely. Things are improving, the sheer variety of apps on the market for your phone for accessibility is a staggering testament to this, but unless we end up living in a society where we have little robots to be our eyes I imagine there will always be situations where another person is put on the spot to render some small assistance.
The second negative to being disabled for me is the lack of belief and understanding from the general public. It’s by no means the majority, but I have come across people who tell me that my daughter “will be a help”. Really? DO people honestly believe that my fiancée and I live such dreary and doleful lives that we had to have a baby to cheer us up with the understanding that she’ll be a working pair of eyes when she’s older? Well, yes. Some people clearly believe that. And it’s utter nonsense, of course. She’ll do her fair share of chores as anyone else (washing dishes is a chore but we can’t stop eating and when she’s old enough to help out around the home she’ll do so). But that would happen whether we or she were blind or not, the two just don’t conflate at all. I know the great public can be stupid en-mass (remember Boaty Mcboatface?) but how they can’t perceive that we lived perfectly viable lives before her birth but must be bringing her up as a slave to our vision loss is a mystery to me. It’s not just about having a child, of course. I tell someone I’m late for work and I get “Oh, but it’s so good you’ve got a job!”. I ask a company to email me something and I’m told “isn’t it amazing that you can do email?” and on one memorable occasion I was told that “you’re a star” when I came back from a public toilet. What on Earth is that all about? So if I had to put it into a sentence I’d say that this downside to being disabled is the negativity that people project on me as a result of it. I feel very sorry for those who lose their vision later in life because as well as their own uncertainties and confusion about how things will work, they have this huge cultural bundle of negativity to deal with as well.
What would you say is a difficulty for you being VI / disabled?
Perhaps my biggest personal difficulty is having a written signature that isn’t clear. I wasn’t instructed in the use of a pen at an early age. I have a vague memory of a week or so’s practice to open a bank account in my early teens, but that never followed through and so I can rarely duplicate a written signature the second time around. Luckily it’s something with time, effort and practice I should be able to resolve!
As a person with a disability, what are the things you face on a daily /weekly basis that frustrate you?
*In your home
I think my number one irritation at home is consistency. I use a variety of apps to read labels and scan bar codes of produce so I know what things are, and if they are perishable items (such as food) when they go out of date or how to cook them. I’ve found that there’s rarely a simple solution to knowing exactly where on the packaging the bar code or expiration date is. It’s brilliant that I can do so much of this stuff on my own, but frustrating when there’s no consistency of labelling between brands. I understand getting the information in Braille would be a huge cost and mean changes to the manufacturing process, but surely a directive that best before dates should be on one side or other of a product’s packaging isn’t too much to ask!
*outside your home
My biggest issue when out and about is again consistency and awareness. If the bus doesn’t stop in the same place as it did last time I got off, I may only be a few feet from a landmark I know about but that might as well be a mile. Perhaps this is an endemic issue of how mobility training for a blind person works, but it is very hard for me with no useful vision at all to have an overview of an area. I can learn a very specific route from point A to B, and along that route I can identify stable landmarks to assist me, but very rarely am I able to find points nearby any of those landmarks and from there know where I am. This again is something that is changing with technology and I must admit, on the rare occasions I get lost, the public are amazingly helpful. But it would be good if bus drivers were able to explain the difference between where the bus is and where it should be, if shop owners are careful not to obtrude their goods and car owners keep their vehicles on the roads not the pavements. It’s a lot of little things which can add up to an unsettling traveling experience and that which with a little forethought and curtesy would make life much easier not just for me I am sure, but for many blind people too.
Are there any tips or tricks you use in daily life you’d like to pass on to another VI/ disabled person?
I think my biggest tip would be to embrace whatever equipment or aids you need. Whether that’s clipping your socks together for a wash or getting an app on your phone to identify the colour of the pepper you’re chopping into your meal.
Do you use Assisstive technology in your daily living?
Yes, on the computer, phone, tablet an TV.
Braille note :I use a Braille display when needing to make notes in meetings or to read back things when I’m in conversation.
Occasionally, usually for food and drink (i.e. the colour of milk bottle tops etc.
We have 2, my fiancée is an avid cook. I found the scales useful for measuring baby milk when we needed to do that.
Apps are a huge part of my life, because I use them for reading text, identifying colours and currency, working out what products are and how long they’ll last. I’ve probably spent over a hundred pounds on apps on top of the cost of the iPhone itself, but its seriously worth it. Less used apps are handy for working out if the lights are on, GPS, getting lifts in bigger cities, playing games etc.
What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility?
I think the best bit of advice is that there’s stuff out there to help and people who can help with it. Losing anything is bad, losing part of your sensorium must be a huge shock and adapting is never easy.
Any advice you’d like to give to a person with sight / no disabilities?
Don’t assume that because you can’t do something with your eyes closed that it’s impossible for someone else.
Did you seek out any specialist services / charities to help you and your
family deal with your situation?
No. I had support at school as a blind student, but remember, “my situation” was normal for me as an adult.
Where can people find you out in the world?
❤❤ Thank you so much Sean for taking the time to be interviewed! this is definitely an interview I’ll be reading and rereading. Your thoughts and values show that with a positive mental attitude and the right support we really can do anything We set our minds to. ❤❤