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Visual Impairment Leads To Advocacy Campaign

Visual Impairment Featured image description is in the body of the post.

My vision changes every hour, sometimes I can read a street sign, recognize a friend, or read a newspaper headline. Some days I can’t see an inch past my nose.

~Dr. Amy Kavanagh
Women On The Move 59

Visual Impairment Leads To Advocacy Campaign

Amy at BBC image description is in the body of the post.
#1 Amy at BBC

It’s taken 27 years for me to accept my visual impairment. I was born with nystagmus, limited depth perception, and almost no peripheral vision. Alongside light sensitivity and myopia, it’s a mixed bag of sight issues that my doctors continue to puzzle out. My vision changes every hour, sometimes I can read a street sign, recognize a friend or read a newspaper headline. Some days I can’t see an inch past my nose.

In a typically British approach, my parents didn’t want to make a fuss about my disability. They encouraged me to be as normal as possible and it was the best solution when no other help was offered. To this day, my mum says how much she wishes the internet had been around when I was growing up. Although I knew I was different, I didn’t really feel the impact of my visual impairment until I went to university.

I’ve always loved history and I pursued my passion all the way to a PhD! I spent nearly a decade in higher education, and over the years had some of the happiest and lowest times in my life. Working towards my PhD was exhausting and being in denial about my visual impairment added to the strain. Eventually, the work took its toll on my mental and physical health. I’m immensely proud of my accomplishment, as acquiring my PhD was a huge achievement. However, in the end, I knew I needed a change.

Actively Seeking Help Opens The Floodgates

#2 London Underground

It was only through starting a new career at a disability charity that I realised how much help I denied myself. So I started to reach out for some support. First I turned to my twitter community, I had used the social media platform for a few years, mostly for academic networking, but I soon discovered an entire online family of visually impaired people. These new friends had so much advice and guidance. They had been there; they had struggled, they had denied the difficulties, and also finally they had asked for help. It was so refreshing and such a revelation to hear so many similar stories and read about so many people living confident lives after sight loss.

I was encouraged to contact Guide Dogs UK, but I was skeptical. Part of my problem was that I just didn’t identify as “blind.” Even though I was born with a visual impairment, I didn’t think of myself as disabled. Everyone always went on about sight loss, but I’d never had it in the first place! It was my normal, but I was fast realizing I didn’t just have to put on my stiff upper lip and accept it.

Contacting Guide Dogs UK changed my life. The support, skills, and encouragement they have given me, has been incredible. Just one year later I’ve gone from suffering in silence to being a visually impaired activist! I’m now a confident long cane user and I’m waiting for a guide dog. Instead of being in denial about my disability I now advocate for the rights and equal opportunities for visually impaired people.

Advocacy Born Through Acceptance

Selfie description is in the body of the post.
#3 Selfie

I’ve even started a campaign to encourage the public to offer help to disabled people. My #JustAskDontGrab message uses my experiences of positive help, and unwanted grabbing, pushing or pulling, to educate people about how to offer assistance politely and respectfully. Over the last few months it’s gone viral, and I’ve been on the radio, tv and in newspapers! It’s been a whirlwind, but such an empowering experience. Also, I’ve been overwhelmed by the number of visually impaired people who’ve contacted me to say they’ve experienced the same journey. They’ve told me, my story of accepting my visual impairment and the cane has encouraged them to do the same.

I will keep sharing my story because it’s the message I needed growing up. I want young people struggling with their disability to know that they don’t just have to cope. They don’t have to manage alone, there is help out there, and that asking for support is the first step to being themselves, rather than hiding who they really are.

Since embracing my visual impairment as part of my identity I’ve been a happier and more confident person. Using a long white cane has given me freedom and I can travel independently and safely. Most of all, I finally feel like the real me. Of course, there are still difficult days, but I’ve stopped denying my real self and now I openly love my disability.

Visual Impairment Featured Image:

Profile photo of Amy walking through a park. She is using her long cane and wearing a summer dress.

Additional Images:

  1. Head and shoulder shot. Amy is sat in front of a wall with the BBC logo on. She is wearing big headphones over her bright pink hair. She is smiling and looking at the camera.
  2. Amy is standing at a London underground station, with the classic red, blue and white sign behind her. It’s a sunny day, Amy is wearing sunglasses and holding her long cane across her body. She has a light turquoise 50s style print dress on.
  3. A selfie, it’s a sunny day, trees and blue sky in the background. Amy is smiling looking at the camera in large round sunglasses. Her hair is blond with bright pink hair fading from the top. She is wearing a black t-shirt and badge, the badge shows a pair of sunglasses and reads, medical necessity not fashion accessory.

Connecting With Amy:

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WOTM 13 Featuring Stephanae McCoy

You don’t know what you can’t see when you can’t see it…

Steph McCoy
Steph McCoy

The first time I put on eyeglasses was a little over 44 years ago. The feeling of seeing clearly for the first time stole my breath away. The transition was like leaving a dark movie theatre and stepping outdoors on a bright sunny day. It took time for my eyes to adjust because suddenly everything was so clear and focused as if all my senses were reborn; sound was keener, flavors more savory, smells more aromatic, touch more sensitive and sight — well, sight was indescribable. Depth perception was strange, crossing streets and walking down stairs was a little precarious as I acclimated to what is considered 20/20 vision.

For 37 years I was blessed with perfect vision provided I wore corrective lenses. That all changed 9 years ago with two words, “macular hole.” It began when I removed one of my contact lenses, looked in the mirror, and to my horror, half of my face was missing.

The diagnosis, while grim, in my situation all the statistics pointed to a favorable prognosis; One, I was considered very young to experience a macular hole, two, odds were it would not occur in my other eye and three; I had a 95% to 99% probability of having my vision completely restored in my affected eye.

What a relief to know that this unfortunate incident was only a minor inconvenience. When my retina specialist explained to me that he would perform a vitrectomy I jumped at the opportunity.

Vitrectomy is an outpatient surgery done under local anesthesia where the surgeon inserts these tiny instruments into the eye, suctions out the eye fluid, repairs the damage at the back of the eye, then inserts a gas bubble. It was kind of eerie being able to discern light and see the shadows of the instruments moving within my eye while at the same time talking with the surgical team. Afterwards I had to keep my head in a constant downward position for 3 weeks to enable the gas bubble to seal the hole in my macula. This first vitrectomy was not successful and a second surgery was repeated 5 months later.

Fast forward 4 more years with trips to my retina specialist, regular ophthalmologist, low vision specialist and Cleveland Clinic I had a total of 6 procedures/diagnosis:

  1. Detached retina with laser surgery repair in the left eye.
  2. Epiretinal membrane that developed into a small macular hole in my right eye, experimental gas bubble injection during the office visit (I never imagined that I would have a needle literally stuck in my eye while completely conscious – mental note I will not EVER do this again).
  3. Vitrectomy in my right eye to repair the reopened macular hole.
  4. Cataracts
  5. Glaucoma
  6. Ruptured blood vessel which occurred after the last vitrectomy required an injection of medication to stop the bleeding.

Though exhausted from all the procedures and diagnoses when my brother suggested returning to Cleveland Clinic one last time I agreed.

The news was devastating. “Ms. McCoy,” the doctor said, “I’m so sorry to tell you there is nothing more we can do for you.” Those simple words confirmed my worst fears and violently shoved me into the dark abyss of despair. I am now legally blind.

After all I’d been through, I was numb, like an out-of-body experience, I could hear the echo of my heartbeat and I had a difficult time focusing on the doctor’s next words. After what seemed like an eternity, he continued, “Ms. McCoy, you have lived with this condition (high myopia also known as severe nearsightedness) all your life and you have done everything you should do by regularly visiting the eye doctor but you have reached the point where your vision can no longer be corrected.”

By the way, high myopia is a severe form of myopia where my eyeball stretched and became too long. This can lead to holes or tears in the retina and can also cause retinal detachment. Abnormal blood vessels may also grow under the retina and cause changes in vision.

Today, after the removal of the cataracts the left eye is now the good eye with vision measuring 20/600. The vision in the right eye is “finger counting” a measurement used when standard methods no longer work. Out of curiosity I asked my eye doctor what follows after finger counting and was told “hand waving” and “light perception.” Even with these different means of measuring vision because of the vast spectrum of vision loss what one person sees with a specific condition, may not necessarily be the same for another person with the same diagnosis.

Losing my vision feels like being enveloped in a thick, never-ending fog. I sometimes dream that I can see only to awaken with the knowledge that it was only a dream. Throughout the past 9 years, as my eyesight has deteriorated to legal blindness, I’ve learned so much about visual impairments, coping strategies, and advocacy.

Through this experience I have met and worked with the most exceptional people and organizations. Some of which include the Checkered Eye Project, Foundation Fighting Blindness, American Council of the Blind, Pennsylvania Council of the Blind, Golden Triangle Council of the Blind, Blind and Vision Rehabilitation Services of Pittsburgh and VisionAware. I am so honored to be able to serve on the various committees that are part of some of these organizations.

Have a great weekend!!

“Although the world is full of suffering, it is full also of the overcoming of it.” ~Helen Keller