Today’s interview is brought to you by Liam, a lovely guy who liked my Fb page from the beginning of my blogging journey. His feedback, and support has been invaluable to me and i’m very grateful that he has given me his honesty, as well as agreeing to be part of this campaign! 🙂 🙂
Over to you Liam…
Tell me about yourself:
Hi, I’m Liam, I’m 21 and a second year foreign languages student living in Nottingham. My big passions include traveling, goal-ball and meeting new people.
Now we know the basics, can we learn a bit more about you?
What is the medical reason you have a disability?
Have you had your Visual impairment / disability from birth?
I have a very rare genetic condition called Alstrom Syndrome which affects around one in one million people. This means that I was born with some sight but lost it completely within the space of a couple of days around ten years ago. It also affects my hearing–I am moderately deaf in both ears and wear hearing aids–and also has the potential to cause more severe health conditions.
Which terminology do you prefer: Partially Sighted, Visually Impaired, Sight Impaired, Severely Sight Impaired or Blind?
Blind, as everyone knows what it means.
Do you have a cane, Guide Dog or neither?
I use a long cane which has red stripes to indicate my hearing impairment.
If you could extinguish your disability, would you? – If not, please explain why.
Yes I would because it makes certain aspects of life much more difficult, however there are benefits to it.
For those who do not know much about your VI what can you see?
How has your disability effected you?
My disability meant that I struggled to make friends as a child however I attended a specialist secondary school where I was a boarder which made a huge difference. It has led to periods of loneliness but also introduced me to a community which I would not have otherwise found. Physically it means some tasks, including simple ones like popping to the shop for a pint of milk or cooking dinner take longer and are more tiring.
Do you think your disability has made you who you are today?
Yes definitely. It has meant that I have met people who have become lifelong friends, it has introduced me to a new group of people, new activities and new opportunities which I could not imagine having had I been born without a disability.
Is there a particular question you get asked often because of your disability? If so, please explain below.
Two questions I get asked on an almost daily basis: “do you have a guide dog?” and “do you need to use the lift?”
Firstly I don’t have a guide dog because I am allergic to dogs and a little frightened of them, also as a confident cane user I don’t feel that having a guide dog would benefit me at all.
Secondly, No, I don’t need to use the lifts because, as I usually tell people, “it isn’t that part of my body which doesn’t work.” I find this especially irritating because I have a number of friends with limited mobility and they are never offered use of the lifts because they don’t “look disabled” even though they need them much more than I do.
What are the positives of having a disability?
That you are introduced to a community of people who you would not otherwise have met. That you potentially have a wealth of opportunities in front of you and that you never have to pay a bus fare!
What are the negatives of having a disability?
That some things take longer, are more difficult or tiring and that you have to learn to admit to yourself when you need help. I have always found it difficult to ask for help, preferring to try first and generally get myself in a terrible tangle. Whilst I’m not advocating getting everyone to do everything for you–far from it.
What would you say is a difficulty for you being VI /
That things which I think non-disabled/sighted people find simple are difficult and challenging. For a long time when I moved to university I couldn’t operate the washing machines but didn’t want to ask anyone because I felt stupid for not knowing something so straightforward…then after a few weeks someone asked me if I knew how it worked and we worked it out together.
As a person with a disability, what are the things you face on a daily / weekly basis that frustrate you?
One of the most frustrating things in the home is dropping things, or putting them down somewhere, and not being able to find them. If they have fallen into a corner or are in an unusual place you will most likely never find them without help from someone who can see.
Outside the home buses are one of life’s challenges. As so few buses have announcements telling you which stop you are approaching and as they don’t stop at each stop you have to rely on the driver or a fellow passenger telling you when you have reached your destination which is inconsistent and if you get off at the wrong stop you are almost certainly totally lost, hoping that someone will walk past who you can ask to help you out. Even if the drivers tell you when it is your stop it is still an uncomfortable experience because for the whole journey you are doubting whether they will remember or not.
Are there any tips or tricks you use in daily life you’d like to pass on to another VI/ disabled person?
It might sound a little obvious but the best trick is to have plans and routines. To put things back where you found them and don’t change things around too much. Whilst this is difficult to do, especially if you live with other people as most of us do, it could save you a lot of time searching for things and getting frustrated with yourself that you didn’t put them somewhere easier to find.
Do you use assisstive technology in your daily living?
I use a screen reader and braille strip for most of my work. In the home I use a liquid level indicator when making hot drinks. I also use certain apps such as TapTapSee–an app which takes a photograph and describes the picture to you–and the various colour detection apps of which I find ColourDetector to be the most accurate.
What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility?
It might be difficult to come to terms with at first but this is the start of a new adventure, one which will be exciting and full of surprises.
My second piece of advice would be, if you don’t have one already, get yourself a smartphone! They might be expensive but they will become invaluable because of the number of functions and apps which will make things so much easier.
Any advice you’d like to give to a person with sight / no disabilities?
Firstly, if you’re one of the hundreds, maybe thousands, of people who have helped me or another partially sighted person–whether as part of your work at a train station, hospital or supermarket–or as a member of the public, we are all truly grateful. Without your help life would be ten times harder.
In addition to that remember that we are just ordinary people, most of us anyway! I get called “inspirational” or “brave” several times a week and, whilst I know that you mean well, it does get a little tiring and embarrassing because I haven’t done anything to be “inspirational” other than lived my life the same as you have. Likewise people often say “I couldn’t cope if it happened to me” whereas in reality there is no other option, if it happens to you you have to cope.
Did you seek out any specialist services / charities to help you and your family deal with your situation?
I attended New College Worcester, a specialist secondary school for blind pupils, and also worked with Living Paintings, a charity which provides a free postal library service of tactile books and information packs for blind and partially sighted people. I have also used the specialist company Traveleyes, who provide holidays for blind and partially sighted people to realise some of my travel dreams.
Where can people find you out in the world?
Find me on twitter @liamgoalball94
On facebook at Liam Goalball Mackin
Or join my facebook group: Ask a Blindy
Thanks so much Liam for your very positive yet honest interview! I really enjoyed reading it, because you have put into words so many of my own thoughts and feelings, especially when it comes to using buses! 🙂
Please don’t forget to follow his links, and why not share the love? Leave him a comment, we would both appreciate it!
If you, or anyone you know, would like to take part in my Campaign, do not hesitate to contact me on the following:
If you enjoyed this interview why not check out the others in the series so far?