#HowISee

93% of people registered blind or partially sighted can see something, meaning that only a very small percentage of visually impaired people are completely blind. The RNIB’s #HowISee campaign aims to raise awareness of this fact and dispel the misconceptions that surround visual impairments such as using a guide dog or white cane means that you are totally blind, or that not using a mobility aid means that you are fully sighted.
Watch the #HowISee video here

 

I am one of the 93%. I have been registered blind since I was seven years old, but I have a limited amount of residual vision which I used to its full advantage.

 

I have a condition called Lebers Congenital Amaurosis (LCA) which means that my retinas don’t function properly causing my Visual impairment. I also have Nystagmas meaning an involuntary movement of the eyes as they try to focus.

 

My condition has meant that I have never been fully sighted, but when I was a child I did have a considerable amount of residual vision which meant that I could read, see colour and use magnification for a time.

 

The nature of my condition however means that my site has been gradually deteriorating since birth, culminating in a sudden deterioration in my teens. This left me with light perception in my right eye and a small amount of residual peripheral vision in my left. My site has stabilised since, though there is the possibility that it could deteriorate again.

 

I try to use my remaining vision as much as I possibly can, which is something I have had to learn to do. It was only when I received mobility training from a rehab worker who is actually also visually impaired herself two years ago that I was able to teach myself to utilise the remaining vision that I have.

 

With the peripheral vision in my left I, I can distinguish contrast and rarely I can make out a bright colour. This doesn’t sound like much, but you’d be surprised how useful even that is in daily life. It means that I can follow a building line by distinguishing a white building from a darker one; I can see distinctive road markings such as a zebra crossing; I can find the counter in a Starbucks by spotting the bright lights. All these things help immensely in my orientation and are things I use on a daily basis when getting around independently.

 

This is my experience of visual impairment, my experience of LCA. But that is not to mean that everyone’s experience is the same. Out of all the visually impaired people I know I don’t think I know two people who see the same thing. Not even people with the same condition as me. I know others with LCA who have enough residual vision to read print and yet others who are totally blind.

 

I am often asked if I am my guide dogs trainer because I apparently “don’t look blind”. I’m not entirely certain if this is because of how are use my residual vision to get around, or just because I am a reasonably confident young woman who doesn’t fit into the traditional stereotype of a plain old blind man with a white cane. Either way this always feels like a bit of a backhanded compliment to me, because besides the fact that I’m not totally blind so why would I look as such, what does blind look like anyway?

 

I have mentioned previously on this blog that the spectrum of visual impairment is huge, as is is the spectrum of ways that people live with their visual impairment. This is why it’s problematic to put people in boxes such as guide dog user must be totally blind, or symbol cane user must be able to read small print.

 

The important message that the #HowISee campaign is trying to convey is not to judge a book by its cover, or a blind person by their mobility aid (or lack there of). Everyone is an individual, even blind people 😉

 

Join in the campaign by explaining how you see the world and sharing your own stories of any awkward moments or misconceptions you’ve experienced using the #HowISee hashtag throughout August.

Advertisements

#HighFiveForAnxiety

Disclaimer: This post is not intended to offend or upset anyone, neither am I a mental health expert or professional. I’m only speaking from my own experience. 
#HighFiveForAnxiety
 
Anxiety UK have recently launched a Twitter campaign to break the stigma surrounding mental health. The #HighFiveForAnxiety hashtag hopes to get people talking about anxiety and mental health; topics rarely discussed in day-to-day conversation. Thousands of people have tweeted sharing personal experiences and messages of support using the hashtag #HighFiveForAnxiety, including me.
I have struggled with Anxiety coupled with Depression for the last couple of years. I receive counselling and practice Mindfulness to manage it as best as I can. Very recently, my Anxiety peaked making me feel more vulnerable and helpless than I have in a long time. Yesterday I was feeling particularly low so took to Twitter to get my mind off things, where I found the #HighFiveForAnxiety trend.
Reading the tweets, I found myself identifying and relating to people I’d never met. I tweeted using the hashtag and felt relief that I’d gotten some feelings off my chest. Then my tweet was retweeted by @AnxietyUk and was favourited by a couple of people. Then my tweet was shared by others and favourited even more times. I was overwhelmed. At a time when Anxiety was making me feel especially lonely and isolated, the #HighFiveForAnxiety campaign made me feel supported in a way that I never expected.
 
What is Anxiety?
 
Anxiety makes me feel alone. I feel ashamed of my weakness and embarrassed of my vulnerability. I feel suffocated, claustrophobic and like I’m trapped in my own head. Irrational thoughts crowd my mind space, but despite knowing that their irrational I can’t rationalise them. I can’t understand how everyone else can go about their lives seemingly care free, when leaving my room or answering the phone are monumental challenges for me. I shake and find it difficult to talk or stay still. I don’t know how to tell anyone because I doubt they’d understand, mainly because I don’t know how to explain.
Before I understood that what I experience is Anxiety and Depression, the worst thing I did was not tell anyone. I find it incredibly difficult to admit my own weakness or make myself vulnerable. The fact that I had stopped bothering to take care of myself and sometimes wouldn’t leave my room for days at a time wasn’t as concerning to me as the thought of actually admitting these facts to someone. Because what if I did and they said that there was something wrong with me? What if they assessed me and put me in the box of ‘mentally ill’? What if confessing my feelings to someone lead them to confirm that I was broken, defective, crazy?
 
Physical health/mental health
 
Imagine that you wake up one morning feeling nauseous. You can’t keep down your breakfast and you feel weak, clammy and all round crappy. What do you do?
You’d probably try to get something from the chemist to relieve your symptoms. You might make an appointment with your GP. You could tell work/school/college that you’ve got a stomach bug and won’t be in today.
Now imagine that you wake up one morning feeling completely unmotivated to get out of bed. You’ve had a terrible night sleep because you were up half the night worrying about anything and everything. The thought of leaving your bed and facing the world makes you panicky because you can’t stop imagining all sorts of horrific scenarios in your head. What do you do?
It’s unlikely that you could get anything over the counter that would stop you feeling anxious or depressed. It’s unlikely that you’d think to ring your GP or call work/school/college to tell them how you’re feeling. It’s likely that you’d try to force yourself to carry on as normal, or you’d stay in bed and burry your head under the pillow trying to ignore that anything is wrong.
 
Why should we talk about mental health?
 
According to the Mind website, 1 in 4 people in the UK will experience a mental health problem each year. It’s more common than you think. Chances are that at least one person you’ve interacted with today have experienced struggles with their mental health. But you don’t realise it, because we don’t talk about it.
When I have my guide dog or my cane with me it’s perfectly obvious to anyone that I am visually impaired. This often prompts comments or questions, it usually makes people more understanding and more willing to help. But there is nothing physical about me that would indicate to you that I experience Anxiety and Depression. You wouldn’t know, unless I told you. And if I told you, what would you think? If I turned to you and said, “This situation is making me really anxious”, what would you say? Would you be shocked? Would you know how to help me? Would you understand what I might need?
When I was at my lowest with Anxiety and Depression, one of my friends was going through very similar feelings. We would talk for hours about our feelings, but we never thought that how we felt might have a name or might not be, for want of a better word, normal. We confessed how we felt to each other, but thought it impossible to admit it to anyone else. Simultaneously, another of my friends was experiencing similar feelings, but neither of us ever discussed it. It was only much later, when we were both able to open up about our experiences and share what was really going on that we realised how much support we could’ve gleaned from each other if we’d only confided in each other.
I’ve learned that one of the most important steps I can take to ensuring that I never return to my lowest point again is by trusting others with my thoughts and feelings. That includes professionals, family and friends and my University. If I’d never spoken up about how I was feeling, I would never have been able to access the support that I needed to improve.
 
If I had come across #HighFiveForAnxiety when I was at my lowest, I know that being able to relate to hundreds of people online and being able to identify with their experiences would’ve made me feel much more secure about admitting my feelings. It would’ve reassured me that I wasn’t alone, that there wasn’t anything wrong with me and that there are things and people that can help. I might’ve told my friend going through the same thing and we could’ve supported each other. I might have felt able to confide in my other friend and could’ve supported them as well. It would’ve given me the courage to talk.
 
Please check out the #HighFiveForAnxiety hashtag and join in by tweeting your thoughts about Anxiety. If you feel that you might be struggling with your mental health, check out the websites below for tips and support.
 
Thank you for reading and remember to comment or tweet me @seemyway15 with any questions about my experience of Anxiety and Depression.
 
Anxiety UK: http://www.anxietyuk.org.uk
 
Mind: http://www.mind.org.uk                                                             
 

#EndTheAwkward

Disability Charity Scope UK’s #EndTheAwkward campaign is back stronger than everv trying to end the awkwardness surrounding disability.
 
“Two-thirds of people feel awkward around disability”
 
Emily Davison AKA Fashioneyesta recently made this video telling her stories about the awkward moments she’s experienced due to her disability.

 
So after she tagged me to join in, I couldn’t wait to get involved and share my own cringey moments in a bid to #EndTheAwkward.
 
“Are you blind love?”
 
This first awkward moment happened a few years ago when I was travelling alone on a train. I hadn’t long been travelling independently and was still getting used to using my cane on a regular basis. Growing up, I always felt that the cane made me stand out and was reluctant to use it for fear of not looking “normal”. It wasn’t until I was about 18 that I really gave into using it productively.
Anyway, so there I was. Sat happily on the train, feeling quite pleased with how the journey had gone and enjoying the boost in confidence I’d gotten from visiting my friend. Along came the food and drinks trolley and feeling pretty thirsty, I plucked up the nerve to say “excuse me” to flag the trolley down.
I think this was the first time I’d done this; not being able to make eye contact or see peoples facial expressions has always made me a bit nervous of situations like this. There have been far too many occasions when I’ve answered someones cheery greeting, only to realise that they’re actually on the phone, or I’ve asked someone for directions only to find out that I’m actually chatting to a lamppost for things like this to come easily to me.
So riding on my recently boosted confidence I asked the man pulling the trolley, “Do you have any drinks on this trolley?” (This may have been a stupid question, but in my defence it made sense to me to make sure that this was the food and drink trolley before I asked for a diet coke). My enquiry was met with the scornful and disbelieving reply, “do I have any drinks?”
“Yeah…” I said, a little uncertainly. To which he replied, obviously not trying very hard to suppress a snigger and feeling very proud of himself for this witty comeback,
“Ha! Are you blind love?”
“Well, yes” I said, casually lifting my folded cane from the seat next to me to show him.
The deathly silence that enveloped the passengers within our vicinity let me know that this encounter hadn’t gone unnoticed. Now, I obviously couldn’t see how red he went. But considering the tremor in his voice when he listed the soft drinks and how much his hand shook when he dropped my change, I think he was a little embarrassed.
But he’d embarrassed me too. His ignorance and smart-arse attitude made me feel so small and stupid. But at the same time I knew that he was the one in the wrong. In the long run the experience only served to thicken my skin against such comments.
 
The invasion of the prams
 
This awkward encounter again went down on a train (I travel a lot).
The rail assistance had put Jazzy and I in the disabled seats because the train was so full that some passengers were forced to stand. We don’t normally do this because if a wheelchair user gets on and needs the space we have to try to find another alternative, but on this particular occasion we had no other choice.
In fact I don’t know what would’ve happened if a wheelchair user had needed to board the train because following us into the carriage came no less than three sets of families with a pram each. I was asked to move to make room for the prams, but I had to explain that on this occasion I couldn’t due to their literally being no alternative and my needing space for my guide dog. My reply was met with grumbling and mutters but I was challenged no further.
Sometime into the journey I became aware that Jazzy was eating something. When I investigated I discovered that she was eating crisps that seemed to be falling from the nearby pram. I tried to draw the attention of the childs mother, but her reaction made me feel very embarrassed, undermined and incompetent. She loudly shook off my request saying,
“Oh they’re only crisps love, she doesn’t mind sharing.” I gathered from her response that her child was actually trying to feed Jazzy, so I asked again if she minded preventing her child from doing so as it would interfere with my guide dog’s training. She seemed to take offense at this and said,
“Well if she’s so well trained she shouldn’t be eating my kids crisps then should she?” and then proceeded to explain very loudly to her child so that the whole carriage could hear, “no don’t give the doggy your crisps love, that poor doggy isn’t allowed any food. Doggy shouldn’t have been eating your crisps anyway should it sweetheart, come here don’t look at the doggy anymore.”
She called the care of my guide dog into question and made me out to be the bad guy, but I wasn’t confident enough to stand up for myself and explain properly. I get very tongue-tied when faced with confrontation and find it hard to articulate myself clearly, so I felt powerless to defend myself or Jazzy. This was also quite early on in mine and Jazzy’s relationship and I hadn’t really encountered this kind of thing before. But all the fun of Jo Public’s varying reactions to my guide dog is something for another post.
 
Hiking stick or mobility aid?
 
This awkward moment is the most recent and funniest that I’ll share today.
Only about a month ago, myself and two other visually impaired friends had just gotten off a train and were standing outside figuring out whether to get a taxi or to walk home. I had Jazzy with me while both my mates were using canes. However, one of my friends has chosen to jaz up his mobility aid by opting to have a bright blue cane rather than the traditional white.
We were talking amongst ourselves trying to work out what to do when a young guy came up to us and quite smugly said,
“Did you have fun hiking today guys?” We stopped mid-conversation, thinking we’d misheard.
“Those are some funky looking hiking sticks you have there” he elaborated, going on to ask us where exactly we’d been hiking, in Cambridgeshire, where there are no mountains…
It finally dawned on us that the poor guy had mistaken the canes for hiking sticks. We explained that we hadn’t been hiking, that we were blind and that they were our canes whilst trying not to laugh along with his mates who’d witnessed his blunder. I chipped in sarcastically with,
“yeah, she’s my hiking dog. I ride her up the mountains…” which I was rewarded for with more laughter. The poor guy was pretty embarrassed and very apologetic, but we tried to reassure him that we weren’t offended.
Occasions like this present a different kind of awkwardness I think. From my experience, it’s much better to laugh at yourself and with others rather than get stressed out or touchy about silly mistakes. What makes it awkward is when the perpetrator of the misunderstanding can’t laugh along with you. They’re too mortified at having possibly offended you to relax enough to see the funny side. This often makes it much more awkward than if they’d just share the joke.
 
#EndTheAwkward
 
I could share so many other awkward moments, but I don’t think I’d ever finish this post. There’ve been times when canes have been mistaken for fishing poles, when strangers have wanted to pray for me to be healed, when my guide dog has been described as “magic” and all sorts of wonderfully weird situations have arisen.
What I’ve come to learn is that your own awkwardness about your disability is reflected in others. If your uncomfortable about your impairment and don’t know how to talk about it/understand it/laugh about it, you’re not in a position to make others feel comfortable addressing it either.
Scopes #EndTheAwkward is a fantastic steppingstone towards dispelling the taboo that surrounds disability, but I think it’s important to remember that it starts with us; only by accepting ourselves, our capabilities and limitations and by understanding our position in society can we begin to change it.
 
Find out more information about #EndTheAwkward here:
http://www.scope.org.uk/awkward
 
And I tag these bloggers to share their own awkward moments:
Beauty Within http://www.wakeupandcthemakeup.wordpress.com
Freely Me marameeh.wordpress.com
Dekota Rose https://www.youtube.com/watch?v=ty8cFHexOEs&feature=youtu.be
 
Thanks as always for reading and please enter your email address in the box below to get my posts sent straight to your inbox.