Today’s interview is brought to you by Matthew, he followed me on Twitter, and was very kind; liking and retweeting my tweets. Of course I said my thank you’s, and we began chatting from there. 🙂 He is a very lovely guy, and I hope you give him all the love and support he deserves for writing this!
On to you Matthew 🙂
Tell me about yourself:
I’m Matthew, 29 and live in the North West of England. Right now I’m a stay at home dad looking after my 3 year old girl, before that I stayed at home to look after my older son but he is now at school full time.
To be honest, I kinda hide behind this as a reason not to try harder to find work because I am afraid that I wouldn’t find a job as I have no formal qualification except for GCSE’s. That, combined with my visual impairment I find it hard to justify anyone employing me.
I’m not short of hobbies but I have struggled sticking to one hobby for very long. I enjoy gaming mainly on PC but as my eyesight has deteriorated over the last few years I’ve found this increasingly difficult. I attempted to take up twitch streaming to go along with my gaming hobby but as I lack any kind of discernible personality I was about as popular on there as a bunch of flowers at a Hayfever convention.
I also have a desire to learn programming of one shade or another so I apply some time towards learning that skill. Although it’s slow going as I suffer from bipolar and my thought process swings from invincible to useless on a regular basis.
Now we know the basics, can we learn a bit more about you?
What is the medical reason you have a disability?
I suffer from a hereditary condition called Retinitis Pigmentosa commonly referred to as RP .
Have you had your Visual impairment / disability from birth?
As it is a hereditary condition I assume it’s been lurking in there since birth but I was only formally diagnosed at the age of 7. It’s harder to pinpoint a start date for my mental conditions.
Which terminology do you prefer: Partially Sighted, Visually Impaired, Sight Impaired, Severely Sight Impaired or Blind?
The government uses both Visually Impaired and Blind when pigeonholing people like us/me but although my visual acuity is hand movements only I feel like an imposter using the term Blind as I do still have some sight. So I guess you can call me what you choose.
Do you have a cane, Guide Dog or neither?
I have a cane but never use it. I guess for the same reason as above, as I have some sight I’d feel like an imposter if I were to use it, although it would come in handy in some circumstances especially when crossing the road to inform drivers of my condition.
If you could extinguish your disability, would you? – If not, please explain why.
in a heartbeat I know people attribute their personality or at least part of it to their disability and rightly so in most cases. Who’s to say that you wouldn’t have turned out the same or a better version of yourself if you had not suffered from your disability?I for one will never know but I can only hope that would have been the case for me. I wouldn’t have felt handicapped during my education or when it came to me finding work. I know for sure I would be driving and earning my way in society instead of hiding behind those I love. My visual impairment is only partially to blame for my feelings, my mental condition plays a huge part in this too. However, I find it hard to believe my mental condition would be this pronounced if I did not suffer from RP or any other disability.
For those who do not know much about your VI what can you see?
For me, colours are not very vivid, so unless things are moving I find it hard to pick objects out from their backgrounds. In addition to this everything appears smaller and out of focus so seeing any detail what so ever is next to impossible. Reading is out for the question too for all but the largest of prints held ridiculously close to my face making it completely impractical. I cannot pick people of a crowd, even my loved ones of whom I’m completely familiar with, including my children. Once they leave my side and mix in with a crowd of children they could be anyone.
How has your disability affects you?
I am very introverted. I do not take any pleasure whatsoever from going out and socialising and so have very few, if any friends outside of my family. The main thing I struggle with when it comes to social interaction is, apart from not being able to see, is the fact I can’t look directly at the people I’m trying to talk to. Sighted people use eye contact as a social indicator when communicating and I lack this basic skill so I find myself being ignored in a conversation or failing to realise when people are addressing me not being able to see who they are looking at. I’m sure this is something that affects most if not all visually impaired people but it is a hurdle I have never been able to clear.
I find myself using my visual impairment as a reason for me not taking part in a lot of physical activities that I used to enjoy such as walking and athletics. It also impacts my day to day life from simple tasks such as grooming and cooking to commuting and playing with my children.
This is where I feel my visual impairment has affected me the most I’m sure my underlying mental issues were there from the start as some people affected with disabilities and visual impairments seem to come to terms with them, adapt to them and some even turn them into an advantage. I have failed completely to do this I tend to focus on the negative in nearly all situations and I always find myself blaming my visual impairment for almost all of my shortcomings.
Do you think your disability has made you who you are today?
*Please give a positive example of how this has done so… Example: Not judging people by their appearance
As you have probably picked up on while reading my responses to the previous questions positivity isn’t my strong suit but I’ll give it my best shot. I suppose the biggest positive impact my visual impairment has had on my life is the fact I don’t rely on my sight. So I get to absorb the world in a completely different way to other, sighted people. I focus on how things feel to the touch and under foot as opposed to what they look like. I appreciate beauty in a completely different way, assessing someone’s attractiveness (superficially) by what they sound like as opposed to what they look like.
Is there a particular question you get asked often because of your disability? If so, please explain below.
I think what can you see’ is or was the main question I was asked at school when people found out I suffered from a visual impairment. However as I try my best, for better or worse, not to draw attention to the fact I have a visual impairment I don’t get confronted with that many questions.
What are the positives of having a disability?
Free public transport is a boon as the cost of that is ever increasing. However unpopular this may sound, having the security of state benefits is also very reassuring as it gives the disabled a chance to live a reasonable life, if not living it up if managed well you aren’t poverty stricken either. However recently this has become a bone of contention in the conservative party as they have taken it upon themselves to change up the current benefits system and introduce a lot of uncertainty into a lot of disabled people’s lives, including my own.
What are the negatives of having a disability?
Although I previously mentioned this as a [positive, having to rely on state benefits for my income is a huge disadvantage. I feel trapped by them, they don’t offer me the freedom to look for work without the risk of losing my benefits. As a family man I can’t afford to apply for a job, get it, then lose it again after finding myself unable to manage the job and have to go without either pay or benefits in the intervening period. My family needs money to live and right now I see no other way to obtain that other than benefits. I hold those who suffer from disabilities, especially visual impairment and hold down a full time job in the highest of regards as I could only dream to be among them doing the same.
What would you say is a difficulty for you being VI / disabled?
Difficulties come thick and fast when you have a visual impairment. The smallest thing a fully sighted person might take for granted from making sure they are wearing matching coloured socks / shoes to having clean nails and tidy hair. To the larger things such as getting from A to B and shopping. Sure these things can be overcome with adaptations and the reliance on friends or family. But having to rely so heavily on other for everything make you, or at least me, feel like a burden on family, friend and society as a whole.
As a person with a disability, what are the things you face on a daily / weekly basis that frustrate you?
*In your home
Not being able to find things such as my mobile phone or my toothbrush, as has been mentioned by some of your other interviewees is a major bugbear of mine.Along with identifying the difference between shampoo and shower gel in the myriad of different bottles that turns up in the bathroom thanks to my partners addiction with buying what seems like one of every kind on the market. Finding and identifying specific toys when playing with my young son and baby girl is also difficult and somewhat upsetting .
*outside your home
I find getting around using public transport very difficult, with my unwillingness to use a cane or identify myself as being visually impaired I find locating the right bus to get to where I need to be when traveling alone next to impossible, the same applies when using the train.
This issues raises it’s head when shopping too, I find myself taking the best guess when asked to go collect something from the shop by my partner and just hoping I have enough money in my pocket when going to the till as I have no idea how much anything costs as I am unable to read and unwilling to ask. So a white bread request from my partner is often a brown loaf of bread when it arrives home and semi skimmed being delivered as full fat.
Are there any tips or tricks you use in daily life you’d like to pass on to another VI/ disabled person?
I wish I had a few tricks that made my life easier but the only one I can think of is utilising the talkback feature on my android phone. That paired with a bluetooth headset makes it possible for me to use the vast majority of the features of my phone either at home or out and about without feeling self conscious. Not all third party applications are compatible or take advantage of this feature fully but just being able to phone and text is a huge benefit.
Do you use Assistive technology in your daily living?
I use windows magnifier and narrator on my home PC and the accessibility features on my phone. Apart from that I don’t take advantage of any other assistive technologies although I’m sure there are plenty out there that would make my life a lot easier.
What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility?
Find someone that can help you come to terms with you condition, weather that be a counsellor or your GP, a charity like RNIB or action for the blind. You need to come to terms with it and move forward with your life, don’t let it take over and dominate your life like it has with mine. It has held me back for so long, I’m 29 years old and haven’t achieved anything with my life. Don’t let the same happen to you. Look on me as an example of what not to do.
Any advice you’d like to give to a person with sight / no disabilities?
Don’t assume, don’t assume that people asking for the destination of the bus they are about to step on are just too lazy to look at the front of the bus for themselves, instead, if you know the answer, just answer or perhaps look for them. Don’t assume that if someone walks into you in the street that they are instantly a trouble maker, perhaps they didn’t see you and a simple gesture of kindness and a passing ‘are you ok’ might be in order as opposed to a hail of insults. Don’t assume that ‘if they need help they’ll ask for it’ because that isn’t always the case, if you see someone struggling, offer help, maybe they’ll accept your offer, maybe they won’t until you offer you won’t know.
Did you seek out any specialist services / charities to help you and your family deal with your situation?
I have sought out help in the past from specialist groups and charities in the past such as action for the blind but as I touched on earlier, I sometimes feel like an imposter and find it hard to seek out help from these charities. I feel like a huge burden on society as it is and don’t’ like to put on others. This may be my mental condition talking, but I can’t change how I feel.
Where can people find you out in the world?
Wow Matthew, thank you so much for opening up and being so open and honest with your struggles with your mental health, and the impact it has had on you as a person, alongside your visual impairment. It’s brave of you to do so, and i’m glad you felt you could.
I am always here if ever you want to talk, and i’m sure i’m not the only one who will reach out to you, once they too have read your raw and thought provoking interview.
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Thank you once again Matthew.
Much Love, Sassy x