At this point in my RP journey, I am sans mobility devices; no white cane, no seeing eye dog, no glaringly obvious low vision contraptions. I still have about 20 degrees of peripheral vision in each eye; and yet I am legally blind.. So how does one navigate the world when they live in the space between sighted and blind? When they are afflicted with what I call an invisible disability? Carefully, with frustration, and at times with humor.
Some days, I feel as if my RP is easy to forget, to push out into the dusty edges. If you saw me, you would never know I have a disability; I have learned to navigate the world so well that unless someone actually knows that I have RP, it appears as if I am just as sighted as the next person; until I trip over the curb or bump into someone walking past me who any normally sighted person would have seen. And because I appear normally sighted, these bumps and trips are often met with anger from the affronted party. I have been called clumsy and stupid and occasionally bitch. Ok, so I may be a bitch, sometimes, but I am not stupid or clumsy……..I am blind. I am afflicted with a disability that is invisible to the world and the world is becoming invisible to me.
The world is becoming invisible; sounds scary and sometimes I feel impossibly afraid, but most of the time I just continue to muddle my way through, laughing at the spills along the way. Simply put, when you have RP, you don’t know what you don’t see because you can’t see it. Of course, intellectually, there is an understanding that your view of the world is limited and hopefully this keeps you hyper aware and in constant scanning mode, but the dark edges aren’t an entity, they are just nothing. It is as if the edges of the world have been erased.
July 19, 2010 at 12:03 pm
Hello there,
First, I am am technically legally blind myself. My vision is about 20/200 with glasses. They’d be worse without them. I’ve been this way since birth. I’m also hearing impaired in both ears. I’m sharing this for a reason. So you’d know I’m not talking without knowledge.
I’ve met a lot of “recents” over the years and heard how scary it can be to find yourself disabled. In your case, it is gradual. I’ve yet to find out, but why are you not using a seeing eye dong? Or, a cane for that matter? These do more than just help you. They tell other people that you are legally blind, so as to keep people from walking into you. That is, it does give people a “clue”.
I may be reading into this, but I’ve had my share of people acting as I were helpless. I’m not. It doesn’t happen too often and yet I must extend grace to those that do.
August 2, 2010 at 7:13 am
Barry,
I can’t speak for the blogger, but for myself, who is progressively going blind; I’m at a stage where I can see well enough to get around unassisted but badly enough to get into some bumps and scrapes now and then due to a lack of peripheral vision. So it’s kind of an in-between state where a cane or a dog might not be practical (yet).
I don’t know how it works in the US, but in the UK one is not technically considered blind by the state until one is almost or completely blind. Losing ones drivers license due to bad peripheral vision isn’t even grounds for being considered partially sighted. There’s strict regulations regarding visual acuity and or peripheral vision that determine whether one is normally sighted, partially sighted, or blind. I think it’s fairly strict because of the welfare system here and the disability benefits one can receive if blind. Being unable to drive is not considered reason enough to qualify for any kind of benefit because the public transit systems are considered good enough.
Rhett
August 2, 2010 at 12:52 pm
thanks for this Rhett! You said exactly what i couldn’t.
s
June 3, 2011 at 6:44 pm
THIS BLOG IS 100% OF WHAT HAPPENS TO ME ALL THE TIME.. I HAVE HARDLY ANY SIDE VISION BUT I AM STILL AT THE POINT WHERE I CAN WORK AND DO THINGS WITHOUT NEEDING A DEVICE FOR BLINDNESS.. I AM LEAGALLY BLIND. ..ITS WERID WHEN YOU THINK OF BEING LEAGALLY BLIND YOU THINK OF SOMONE WHO HAS NO VISION….NOT OF ONE WHO STILL HAS ALOT OF VISION LEFT, I HAVE GOTTEN ALOT OF DIRTY LOOKS AND HARSH COMMMENTS OVER THE PAST FEW YEARS FOR CUTTING SOMEONE OFF I NEVER SAW OR BUMPING A CART INTO A POST.. LATELY I KEEP HITTING MY MOTHERS KITCHEN CABINET WHEN I REACH FOR SOMETHING…THEY SAY I SHOULD BE MORE CAREFUL.. BUT ITS HARD.. ITS AS IF YOU KNOW ITS THERE OR YOU KNOW ITS COMING BUT YOU STILL HIT IT.
June 4, 2011 at 10:22 am
I think it is really hard for people to understand RP; the world is so full of black and white thinkers and RP just doesn’t fit into that mold. I always get really frustrated when people tell me to be careful, as if I am bumping into things on purpose. I understand the feeling you are talking about; I always put my water bottle on the floor next to the couch when my husband and I are watching TV and although I know it is there, I still always kick it over. I suppose I should put it somewhere else, but what can I say, I am stubborn.
I am really glad that you found my blog and please feel free to come and chat here or on facebook any time. I really think it helps us all to have others who can understand exactly what we are going through. Explaining it to the non RP people just doesn’t seem to translate.
February 3, 2018 at 10:19 am
I feel the fear and trepidation in your writing. Every post seems like you are stepping closer and taking me with you. I say this only to REPEATEDLY convey that you are one hell of a writer. Your posts are not long, but they transport. I hope this journey takes me somewhere in particular when I get to the present. I know time and reading will tell, so I won’t share my hope.
February 3, 2018 at 10:43 am
I still can’t believe you are reading my blog in this thoughtful and amazing way. It is the greatest gift! You will find some repetition as you read and huge gaps of time; I am slow to do everything.
February 3, 2018 at 10:46 am
Then you don’t understand the importance of what I call a “deep dive”. You have blessed us with your life in words. I do this to gain perspective on my life and truly understand another’s. I do it to share and hopefully give more people the chance to stop being so closed-minded. Find out why someone is the way they are. We out to each other.
February 3, 2018 at 10:52 am
I don’t know how many people really allow themselves to travel outside of their shells, but you do it so fiercely. I love the term “deep dive”! I love the idea of reading the evolution of someones blog of learning about who they are through points in time. I am flattered that my writing has let you to want to know more about my journey!
February 3, 2018 at 10:55 am
it hasn’t let me…it has made me. I don’t go looking to do this. Once I hear the call, though, I owe it to the writer to try to share their journey.