Hello and welcome back to my #DisabilityQ&A Campaign 🙂
today’s interview is brought to you by a very interesting man called Glenn, we met on Twitter and he was keen to be part of my series. I hope you will agree that his interview is interesting, eye-opening and shows that if you have the right support, and determination, you can do anything!
Tell me about yourself:
Hi, I’m Glen Sheader, 33, I live in Blackburn, but from Bolton. I am a assistive Technology Coordinator. My hobbies Include: Walking, trying new food, reading, social media, technology, TV, football, and generally keeping fit.
Now we know the basics, can we learn a bit more about you?
What is the medical reason you have a disability?
I am registered blind/severely sight impaired due to Lebers Hereditary Optic Neuropathy.
Have you had your Visual impairment / disability from birth?
No, I developed my eye condition early in 2006 when I was 22.
Which terminology do you prefer: Partially Sighted, Visually Impaired,
Sight Impaired, Severely Sight Impaired or Blind?
I usually refer to myself as being Visually Impaired.
Do you have a cane, Guide Dog or neither?
I use a long white cane.
If you could extinguish your disability, would you?
This is a difficult question, you would think that the obvious answer would be a straight forward Yes, however I would say that I would be a 70% Yes. When I lost my vision, it went in around 5 weeks, and took almost 2 years to accept, and I fear that if it came back instantly, it would also take some time to accept. There would be some hesitation, but my answer would be a yes. I know that I still miss having sight, there are many occasions when I day-dream about what life would be like being fully sighted again.
For those who do not know much about your VI what can you see?
My vision is severely blurred, if you imagine a thick fogg right up to your nose and trying to see through it, that is what it is like. So most of the time, I can see what is in front of me up to a certain point, but I cannot see any details. So, I can see a person, but I have no idea what they look like.
How has your disability effected you?
*Socially – to be very honest, when I developed my visual impairment at the age of 22, I slowly isolated myself. From my perception, there was an obvious social awkwardness. My people did not know how to react or what to say when around me, plus I did not know how, or did not want to explain my condition. Now later in life, I have a small circle of friends, but it is hard socialising when you cannot recognise people. If someone walks past me and says “hi”, most of the time I am not sure who that person is. So 11 years on from developing my eye condition, I would say it is still a challenge for me socially.
*physically – I have no problems physically. I often think that I am physically fitter than most, as I do not have the luxury of jumping in the car. I am on foot or public transport everywhere I go.
*Mentally – I am fine mentally, but I do have down moments. There are rare occasions when I find myself feeling low due to the stresses and strains of living a life with a disability. Those first couple of years of trying to accept my disability were extremely difficult. I shut myself away, I had problems sleeping, I drank too much and I struggled to see a future as a blind person. It was a huge help to study as a Counsellor. I did this for personal and professional reasons. I gained an excellent set of skills and a qualification, and I benefited massively from understanding more about ways of thinking, emotions and feeling, and most importantly understanding loss and the grieving process.
Do you think your disability has made you who you are today?
I have strong feelings about this…I feel for some strange reason this happened to me as a harsh wake up call. Before my eye condition my life was not going anywhere. I lived at home with my mum, I drank every night, I liked to smoke pot, I was not very outgoing or adventurous, and I had no good qualifications or a career path. As difficult as those years were trying to get my head around what had happened to me, it was a period of time when I became broken and slowly I started a rebuilding process. Between then and now, I have developed as a person, I have carved out a worthwhile career path for myself, I have met lots of fantastic people, and I feel privileged to have volunteered and worked for some great organisations giving me the experience and opportunity to help and support many people in varying ways. For example, working one-to-one with a person as a Counsellor, or delivering a workshop to a group on Assistive Technology.
Is there a particular question you get asked often because of your
“Can you not just wear glasses”
Or not necessarily a question “You don’t look blind”
My condition is related to my optic nerves, I have no problem with my eyes, so glasses will not make any difference. Also, most visually impaired people do not look blind. I think both of the above are due to a lack of awareness of sight loss in general. Surprisingly many people think that you are either fully sighted or you see total darkness, with nothing in-between. Similarly, people do not understand what a white cane is, or they expect everyone with a sight problem wears dark glasses, taps a white cane around and uses a guide dog, or as many call them a “blind dog”.
What are the positives of having a disability?
I think that my experience of my disability means that I have a different outlook on life. I am a very positive person, I feel that the worst is behind me in my life, and I try my best to enjoy most days and I look forward with hope. I am confident that overcoming the hurdles that I have, have given me the strength and skills to deal with hardship in life.
What are the negatives of having a disability?
Of course I acknowledge that life as a visually impaired person has challenges and difficulties. Because I have had sight, there are times when I know that something would have been much easier to tackle as a fully sighted person. Similarly, it’s tough when you find yourself in a situation where you are treated differently, or even abused for having a visual impairment. These can be harsh reminders of the fact that I have a disability and the happy bubble of life bursts leaving you a little vulnerable.
What would you say is a difficulty for you being VI / disabled?
I think the point that I mentioned above; the issues of socialising are difficult. It is hard to sometimes communicate or more importantly maintain communication are the difficulties. If I could explain to the world that I am very unlikely to recognise them when passing, and a polite “hi it’s such a body” would be great. Many neighbours, associates, friends and even family, will pass me and not acknowledge that it is them, therefore socially communication breaks down. I am sure there are people that no longer talk to me, as they feel that I have ignored them in the past. Where as, the truth is that I have walked by in my bubble and been oblivious to people around me.
As a person with a disability, what are the things you face on a daily /
weekly basis that frustrate you?
*In your home – Not knowing where something is if it has been miss placed. Since being visually impaired, I have been very organised, as I need to know where things are, so that I can find them easily.
*outside your home – I really hate it when people obstruct the pavements, the main culprits being drivers parking their cars inappropriately. It is very frustrating when walking along and having to go into the road around a vehicle to get past. I think some drivers forget that they need to leave sufficient space for a person to get past on the pavement; and this also includes room for a pram, wheelchair, etc.
Are there any tips or tricks you use in daily life you’d like to pass
on to another VI/ disabled person?
One of the biggest tips that I can give to another person with a visual impairment is to become confident with today’s technology. There are accessibility features on most popular devices today, that allow a person with little or no sight to get the most out of using them. There is so much that you can do with a smart phone, to help you be independent. The list is pretty much endless, but here are some benefits that might not be obvious: access print by using the camera, using it to help navigate, an accessible communication device in your pocket, look up bus/train times while out and about, audio description on videos/programs/films, get a picture described, plus all of the main-stream Applications are accessible. It can easily bring a person up-to-speed with their peers.
Do you use Assisstive technology in your daily living?
*Screen reader I am able to use many pieces of Assistive Technology due to my work, but personally I use JAWS on my work laptop and Voice Over on Apple products.
My main device that I use daily is my iPhone. It is such an important piece of technology for me. I use it to communicate by calling, texting or emailing, I use various social media to keep in touch and up-to-date with the world, I read the news, I watch TV/videos/films, I read books. Also, it is my magnifier, my note tacker, my calendar, my diary, my scanner reader, my audio book player, my radio, my GPS navigator, and much more. These are all things that historically I would have to buy as separate items costing a huge amount of money and would certainly not fit in my pocket.
What piece of advice would you give to someone newly diagnosed? Or going
through a deterioration in vision / or mobility?
I would definitely say speak to someone. Both professionals and others with similar issues. When the time is ready get practical help, whether that’s mobility training, or other things, get emotional support, maybe Counselling, self-help advice, peer support groups, and get out there and try your best to keep going. Try not let life stand still for too long, as roots can set in and it is then very hard to challenge yourself and get out of your comfort zone.
Any advice you’d like to give to a person with sight / no disabilities?
variety is the spice of life as they say. If you feel that someone maybe different to you, don’t make that negative judgement. Be open minded and why not accept some variety into your life. What’s the worst that could happen? You might meet someone new interesting, you might, if anything, learn something, and you just may be inspired.
Also, don’t park inappropriately on pavements.
Did you seek out any specialist services / charities to help you and your
family deal with your situation?
*RNIB Schools? I lost my job working for a Ford Dealership in the Motor Trade, so from here I attended an RNIB college in Loughborough.
I had mobility training from a Rehab Officer.
I had some Counselling.
I attended some social groups at my local blind society.
I did lots of volunteering to fill the gap in my skills and experience to help me seek employment.
Where can people find you out in the world?
❤❤ Thank you so much Glen for taking the time to be interviewed! Your journey with sight loss has definitely been an interesting one to read, I love how you’ve turned your negatives into positive’s, especially with becoming a counsellor, learning to understand yourself and help others is a great thing!
Why not take a look at the rest of the interviews so far? #DisabilityQ&A Series http://www.thinkingoutloud-sassystyle.com/category/disability-qa-campaign/