Destigmatizing Vision Loss Within the Retinoblastoma Community

Services, Resources and Adjustment Support


Vision loss is a major part of the retinoblastoma experience, but rarely discussed in depth within our community. Sassy Outwater-Wright explores the trauma of vision loss, the experience of living with reduced or no sight, and pathways to living well at every age and stage of sight-loss.

Respecting the Trauma of Vision Loss

The language we use to refer to people going through vision loss or sight loss varies depending on country, fear, stigma, knowledge and awareness. The one thing that stays consistent, is that losing one’s eyesight is traumatic for everyone involved. Trauma is a word that rarely gets acknowledged out loud, but everyone in the room feels deeply.

What happens when we don’t talk openly about trauma?

Stigmas grow, and they are as pervasive and as harmful as cancer. They close off people to valuable resources and supports, they allow misunderstandings within our community to go unchecked, run rampant, and they harm people.

So, let’s destigmatize two things today:

  • Adjusting to blindness and low vision,
  • and trauma.

 

Aftermath

A diagnosis of vision loss causes grief, fear, rage, feelings of loss, and persistent feelings of being unable to cope or adjust in the moment. This is defined collectively as a traumatic event. In the retinoblastoma community, parents may feel that the only “safe” place to express reaction to trauma is to other retinoblastoma parents who “get it”. Most families go through a period of “shutting down” after the removal of a child’s eye, or feeling like they somehow failed, because treatment didn’t save the eye.

There is something we commonly refer to as “sight over life” in retinoblastoma advocacy circles. That saving eyesight becomes more important than saving a child’s life. I often meet parents who feel that they have failed their child if removal of the eye becomes necessary, because they feel that blindness might almost be a crueler fate for their child than death.

In developed nations, blindness or low vision isn’t something that means the end of a fruitful, happy and successful life. But we’re still very attached to the fear of blindness. Studies rank fear of blindness higher than fear of death. In the heat of a traumatic moment like diagnosis of eye cancer or removal of a child’s eyes, fear escalates, and we shut ourselves off from the one resource that might help us catch a glimpse of hope, because it’s painful to hear it from someone with hope when we have lost ours.

Parents, I urge you to talk to retinoblastoma survivors to get through the trauma of losing a child’s eye. Survivors have been through this. They know what is possible and what isn’t with vision loss. Retinoblastoma survivors are a lifeline to you, even though they feel like the most painful part of the trauma process for you at the beginning. WE as a community need to come together and create empathetic, compassionate and open conversations between adult retinoblastoma survivors and parents. Survivors hold a unique role as compared to doctors or clinical professionals because we know all sides intimately. And when we don’t know, a phone call home to our parents is in order, and doable. We bring the full experience with us.

Turning Trauma to a Chance to Seek Support

These days, thanks to advances in treatment, most children do not go totally blind in both eyes because of retinoblastoma. I am a bilateral retinoblastoma survivor. I have second primary brain tumors, because of retinoblastoma. And I am totally blind in both eyes because of retinoblastoma. I became totally blind at age three. I sit on the board of directors of World Eye Cancer Hope (WE C Hope) USA, and I am the executive Director of the Massachusetts Association for the Blind and Visually Impaired.

MABVI is a statewide organization that has been around since 1903, and our goal is to help people through adjustment to vision loss. WE serve anyone with uncorrectable vision loss in the state of Massachusetts, from point of diagnosis through to total blindness. You do not need to be legally blind to receive services from MABVI, and there are many other such organizations throughout the US and other countries that offer support services to anyone with uncorrectable vision loss in one or both eyes.

Many people feel that utilizing services from an organization like MABVI means they must classify themselves as blind or visually impaired. They don’t seek assistance, or don’t know assistance exists because they do not feel the need to identify with something “blind” even though there may be services to help with their level of vision loss. Many people with sight loss in one eye don’t want to classify themselves as blind or low vision. It’s a scary thing to say that you have vision loss.

Things like low vision occupational therapy, social work adjustment to low vision counseling, assistive technology instruction and life strategies from those who have been through it and adjusted are invaluable when going through vision loss and are available through various organizations and agencies to anyone with any level of uncorrectable vision loss.

Whether you have a small amount of vision loss and found out about it yesterday, or like me, have been totally blind for decades, there are services available to help meet your needs. Low vision rehabilitation services should always respect autonomy. Me offering you three ways to be blind or low vision is not respect of your autonomy. At MABVI and at many other orgs, you tell us about your goals and needs, and we strive to provide you the services you need, thus always centering your life and building a plan around your autonomy, and your family and needs.

WE support not just those going through it, but parents, spouses and other loved ones as well. WE offer services and specialists for seemingly small amounts of vision loss, because rehabilitation services have a profound impact anywhere on the vision loss spectrum. Things like early exposure to orientation and mobility training, strategies for coping with vision loss in one eye, or learning to adjust lighting to avoid eye strain for those with spotty vision are critical components of success.

Often, doctors and hospitals don’t connect parents and families to these resources for partial vision loss because they don’t know that their patient or family could benefit from them. But the effects of lack of support through vision loss are devastating. Children need these supports in school, and those losing sight in adulthood need to have support to help them continue to accomplish the things they want to accomplish without internalizing things like falls, clumsiness, and inability to read as personal failings. They are not failures in any way. They can become safety hazards and endanger you if not attended to with proper support. A few modifications, changes or adaptations is all it takes to turn a fall risk into a safe and healthy environment, and that is easy to do once you connect with an organization who can help. Most countries have nonprofits or statutory services that can help with this.

A man wearing dark glasses walks with a woman along a road, guided by his cane and his hand at her elbow.

Vision Loss Stigma in the RB Community, and How We Change It

Even if it is the loss of just a little vision in one eye, yes, that is still traumatic, and still classified as vision loss. We often separate ourselves in the RB community by loss of sight in one eye or both, and those who lose sight in one eye feel little to no connection to the blind and low vision community. Some don’t want that connection, they do not feel the need to, or do not want to identify as blind or low vision.

How do we bridge these identity gaps so that services are available to everyone?

Identity as blind or low vision is strong in the BVI community because blindness is classified as a visible disability; people see me with my Guide Dog and are instantly aware I am blind.  Therefore, my disability is an absolute part of my identity. It’s something everyone readily knows about me, whether I want them to factor it into how they think of me or not.

But many don’t want that identity label if they don’t need it to function in society in everyday situations, such as driving, reading or work. Even partial loss of sight in one eye can drastically change a person’s life. Resources that can help someone adjust to even small changes are often not utilized because of the perceived connection to the blind and low vision community, due to stigma, lack of awareness, or fear. Perception of blindness is that it is limiting, terrifying, sad, life-altering in a bad way, and that travel with a white cane or Guide Dog is the only way to be “blind”. None of this needs to be true.

Yes, you, as a person with vision loss, or your child going through vision loss if you are a parent, can still get support. Losing sight in one eye does not have to mean you’re just clumsier, or likely to run into things. Partial loss of vision in both eyes, even if not classified as legally blind, can still mean you need some help learning to adapt the world to your needs. And that is not a bad thing. Seeking services doesn’t need to be bad. There is nothing wrong with getting the support you need to access the world on your terms. There are organizations with rehabilitation therapists who can help you learn to cope with any level of vision loss.

I’ve been totally blind for a long time. I won’t say anything like “It hasn’t stopped me from…” because yes, it has. Truthfully, there are days it hurts. I feel the loss of my eyesight keenly, But I get to experience a wealth of things that sight does not let you experience. A good example of this would be working with a Guide Dog or experiencing some of the newest and coolest emerging technologies in the world. If survivors and parents come together to share experiences, resources and strategies, stigmas decrease, and variety of human experience increases and can be shared. Blindness transforms from a mysterious, terrifying concept to a real-world, relatable experience.

Stella Young and the Reality of Not Being Exceptional

Stella Young speaks from the TED stage.

Stella Young speaks from the TED stage in Sydney, Australia, 2014.

As Stella Young so eloquently explained at TEDx Sydney 2014, being a blind person does not make me an exceptional person. I don’t overcome tremendous obstacles because of my blindness, I overcome tremendous obstacles because society was not designed with people like me in mind, so the obstacles in my way are just products of society needing to be educated on how to include people with disabilities. I know, that’s not the traditional way we are taught to think about vision loss and disability, but times are changing, and it’s time we realize that blindness isn’t the barrier we all think it is. It’s not a good thing or a horrible, life-ending thing in most developed nations; it’s just a different experience.

Children going through vision loss need to be able to experience that transition without shame or stigma haunting them from inside the immediate circle of friends and family. The removal of the shame and stigma starts with connecting with empowering organizations that can help remove the stigma of blindness and vision loss.

Going under blindfold as a sighted person does not give you a comparative experience of what life is like for me. I have the advantage of time, learning and lessening of fear. I’ve been in this body, living like this for a long time. I have adjusted. Life in your body isn’t perfect. Life in my body isn’t perfect. But my biggest barriers in life don’t come from the loss of my eyesight to cancer. The biggest barriers I face in life come from able-bodied people who think that my blindness limits me. We’re all interdependent on one another. I don’t need to be completely independent, neither do you. The levels of interdependence change for someone with a disability, and this is not a bad or shameful thing.

Pride might get in the way at first. Defining what is and is not an accessible experience, and putting the tools and strategies in place to cope with inaccessible experiences, is why connection to low vision rehabilitation services is so critical.

Resources for Coping With Vision Loss at Any Stage and Age

Vision Aware is a blog hosted by the American Foundation for the blind with many resources and articles about living with vision loss at any age. Please spend time exploring, learning and asking questions.

www.visionaware.org

I encourage all parents facing loss of a child’s vision from RB to visit consumer groups run by blind and low vision people for blind and low vision people and their families. They are places to find support, and gather info about vision loss, partial or total. Remember, any vision loss needs support and rehabilitation services, and saying the word: “blind” or “low vision” isn’t bad. Disability advocates chant one thing over and over: “Say the word!” because it doesn’t need to be a thing we’re afraid to say aloud. Being disabled is not bad.

if you’re afraid of the word “disability” you’re afraid of the person with the disability. Don’t be. I promise. It’s not that bad. Not when we get the proper support and resources to deal with the access barriers presented by society’s accommodation of that disability.

Hearing that your child will lose their vision is awful. I can’t take that pain away from any parent, nor would I want to even try, because it’s pain, and that pain belongs to the family and the grief of having a child fighting for their life and sight. That is trauma and needs to be heard as such. If you find yourself in that circumstance, I am so sorry.

I’ve been through this too, and so has my family. I have experienced that grief and anger and fear and uncertainty. And I’m here now, doing what I can to help you get through it.

If you must go through loss of your child’s vision, I can tell you, it will be okay. Your child will still be able to thrive and have a full life, though it may be very different from the one you’ve envisioned. You can have help and support through this. And accessing that help and support is a good thing, not a bad thing.

Nothing about us without us is a phrase you hear disability activists use constantly, and I apply it here to vision loss. Don’t go into vision loss experiences with your child without talking to someone who has been there, done that. Get to know and love the disabled community, and the blind community. Find out what they can teach you.

The best sources of information concerning disability come straight from the source; lived experience is the most powerful teacher and the greatest comfort. Many orgs have services from clinically trained people with lived experience themselves to help you deal with adjustment to vision loss whether for you or your child. There are resources that take years to learn about and understand, and we have expertise and knowledge that can help.

Whether you are 50 and just discovering that occupational therapy exists to help you maximize the sight you have in your one good eye, or you’re a parent and your infant is facing double enucleation and you don’t know what to expect, reach out and ask.

Organizations like:

The National Federation of the Blind

The American Council of the Blind

The American Foundation for the Blind

The American Printing House for the Blind

Vision Serve Alliance can help you find a nonprofit in your area.

Canadian National Institute for the Blind

UK Royal National Institute for the Blind

If you are outside the USA, UK or Canada, you can reach out to any of these organizations to help you locate quality rehabilitation services near you.

Each of these organizations has lists of helpful resources and links. They have networks of resources all over the country depending on your region, age, interest and level of vision loss. Some services are state or federally funded. Some are nonprofit. Some are community-based, or paid for by health insurance, and some are national programs led by blind and low vision people.

Hands reading

Please be aware that in retinoblastoma spaces, in-person or online, there are sighted, low vision, legally blind, and totally blind people all in the same space who have the same eye cancer. There is no shame in blindness. There is no shame in sight. There is only fear of what the other is experiencing. There is no shame in asking questions or asking for support. I encourage you to learn about coping with vision loss and wonder about the possibilities of living with vision loss

About the Author

Sassy Outwater-Wright is a disabilities advocate and digital accessibility UX specialist who studies the intersectional effect of technology on persons with multiple disabilities or chronic health conditions. She is a board member of WE C Hope USA and Executive Director of the Massachusetts Association for the Blind and Visually impaired, a Division of MAB Community Services Inc.

Sassy lost her sight in both eyes to retinoblastoma, and has second primary cancer as a result of retinoblastoma. She lives in Salem, Massachusetts. When not involved in advocacy or activism and nonprofit work for the disability and cancer communities, she spends her time writing, working in the physics of music, or arguing with neurosurgeons. She lives with her husband, and her Guide Dog, and enjoys tea, food, Yoga, and all things nerd.