Its been 32 days since we left Ireland to begin our adventure of a lifetime, 56 days since I started @lifeintheblurrylane on Instagram and 27 days since I launched this blog. Its been a journey, both a literal one as we tour France and a philosophical one as I explore and share more about me, my albinism and my experiences of accessibility while travelling. It therefore feels timely to do some reflecting on the first month of Life in the Blurry Lane.
I’ve loved every second of it, from jumping into the internet and making connections there, to going through and coming out of advocacy doubt spirals to fully understanding the spectrum of sight loss. I’ll take another 9 months please!
A leap into the internet void
Sharing your life online is scary and a complete leap into the unknown for me. I had no idea if my content would be interesting, creative, relevant or just boring, boring, boring.
My motivation for doing this blog and Instagram page is to;
- share the good and bad aspects of travelling with a visual impairment
- seek out good examples of accessibility and share these as best practice ideas
- educate others about albinism and share my own experiences with it
- provide insight, reassurance and the chats to people with albinism or a VI and parents of children with albinism or a VI (my parents would have loved this when I was a baby!)
- increase the presence of people with albinism in the media (social and traditional)
I want to show the world that life with a visual impairment (or in the blurry lane!) is as well rounded, diverse and full as someone who is fully sighted. My vision is to create a blog and Instagram page that is a friend, a voice and an advocate for people with albinism worldwide and to empower anyone with a visual impairment to forge their own path. Big dreams I know but why not?
I thought long and hard about the best way to do it, and asked myself a lot of questions like what’s the best strategy? who’s the audience? when will I start? is it the right thing to do? In the end I figured that the best way to go about it was to just do it and stop thinking about it.
I took the leap into the unknown, being the internet – a treasure trove and a bridge inhabited with trolls. So far, I’m glad I did as I have had some heartening, fill you with joy and soul warming reactions to my posts.
I have also found the process of opening up to be much more cathartic than I thought it would be. I get to explore more of myself, learn more about albinism, and find some great examples of accessibility done right. I hope that finding these examples, and comparing them with the bad ones, I can highlight the enormously positive effects of having a really well built, inclusive environment.
I also get to regularly chat to other wonderful people who are rocking on to make their own way in the world, despite their sightloss. There are some incredibly inspirational people out there!
Living online hasn’t always been the easiest, especially when it comes to advocating for what I think is the right thing.
Am I asking for too much?
I don’t know if this is a “being a woman” thing where there is a history of society expecting us to be good and quiet ladies, or if this is something that everyone goes through at some stage. I have asked myself “am I asking for too much here?” at least once a week since I’ve started critically evaluating the accessibility of places.
This has been a struggle to work through, I’ll be honest! It can be overwhelming at times as nearly every day, I come across something that is not fit for purpose for me, a woman with a visual impairment. It gets frustrating after a while and I have often found myself in the mindset of “well if everywhere is built this way, it is me that is the problem”.
As the weeks go on, I am finding it easier to pull myself out of this mindset, but it takes a lot of practice. The best way I have found to do this is to say to myself “I am not the problem, the environment is”. I have learnt that this is a FACT, not fiction. The world is built (by and large) for fully sighted people.
In researching this piece, I listened to Lucy Edwards on the Working Blind Podcast and she had some fantastic titbits I just have to re-share. She speaks about the need to just put yourself out there, own your sightloss and releasing yourself from the expectations of doing everything the same way a sighted person does. No one can expect that of you – especially not yourself!
She also speaks about feeling guilty for being blind or vision impaired, which I can totally relate to. Its a bit mad when you think about it – how can someone feel guilty about a genetic condition they were born with, and cannot change? Writing that makes it feel all the more bizarre but its the gods honest truth. I feel guilty for asking for help, for requesting reasonable accommodations, for having a few extra needs and for requiring a bit of support and some changes to how things are done (in work for example).
I still find this hard to deal with. Even more so now that we are travelling and some experiences or tours that we do need to be adapted for me, like a slower pace on our Beaune bike tour (read more on that here) that affected the whole group. However, I also find that the more I do it, the easier it becomes and the more I can accept that the requests I make are due to a need that is demanded by my eyesight (or lack thereof!). Viewing it this way, helps me take the emotion of it and just look at it like a fact of life.
The same goes for the basics like signs, steps, ground markings, menus etc. that are most of the time, not suitable for people with a visual impairment. I come across inadequate ones of these so often, that it is so hard to keep thinking that the environment is the problem – not me! I am calling for simple fixes to things that will make places so much more accessible. Simple changes like a lick of bright paint on a step edge, a larger font on a sign or a digital map or menu. That is not too much to ask (I am writing this so I can re-read it during moments of doubt! I am also here to tell you, that your needs are not too much to ask either!
Sightloss is a spectrum
This might sound obvious (and I know I should know this by now) but sightloss is a spectrum, with a huge variety of experiences, conditions and reasons for people to be living as blind or vision impaired. That means that all of our experiences are different, but just as valid as each others.
I have an awful habit of saying to myself “oh well my eyesight isn’t as bad as theirs, and so my experience isn’t as relevant”. Logically I know that this is a fundamentally flawed way of thinking and is in complete contradiction to what I have written above. What can I say, I am a flawed human. Shock horror.
Time and time again, I dig myself out of this hole using the resilience my VI taught me (read the full blog post on my learnings here). My experience is just as valid as others. Repeat after me – my experience is just as valid, my experience is just as valid. . .
And the reason for this is – drum roll – we are all different. No two people are alike, therefore no two experiences are alike, therefore, each is valid and good enough in its own right. Even two people the same age, nationality, gender with the same eye condition can have vastly different perspectives on it all.
I have also learnt that things change, and my VI changes depending on where I am. We are now in France, and it is VERY sunny (surprise, surprise). I am finding my light sensitivity is really being tested and I do struggle more here, than at home in Ireland. Who knew I’d be pining for the grey Irish skies? I am now considering my mobility, aids to support when its really bright out and changing the time of day when we go out to do things. I would not need to do this at home. If anyone has any advice on managing photophobia in a bright country, please get in touch!
This is a perfect example of the changing nature of disability, experience and how adaptable we need to be. It also really emphasises the need for fully inclusive environments, where we can be any version of ourselves and still do what we want to do.
So, one month in and the thrill of opening up to the internet, doubting and then reasserting myself while advocating, and really understanding the meaning of a spectrum of sight loss are my top three observations. I’d love to hear your thoughts on these, so throw a comment below, DM me on Instagram @lifeintheblurrylane or email me at firstname.lastname@example.org.
Thanks for reading! Aoife X