autonomy, blindness, children, dignity, disability, independence, parenthood, parenting, pity
I stated in my previous post that I am not a parent. I will probably never know first-hand what challenges a parent faces. Throw an unexpected disability into the mix, and I can honestly say I have no idea what decisions I would reach or mistakes I would make. We are all human; mistakes are inevitable. But they don’t have to determine the course of a child’s life.
I’m a blind adult who has experienced the joy of being a child, whose parents truly did some amazing things to make sure I was as happy, healthy, and autonomous as possible. It wasn’t until I started high school that I began to realize that not all of my peers – especially my blind friends – were given such opportunities and freedoms. As I grew older – through my twenties and now that I’m in my thirties – I frequently notice a truly stifling dynamic toward blind children by their parents. Will some parents be helicopter parents anyway? Absolutely! But when there’s a clear difference in how siblings are treated along disability lines – something I observe regularly – it becomes abundantly clear that blind children are frequently short-changed.
It doesn’t have to be this way. Your blind child deserves so much more…
Your Child Deserves more than A Diagnosis
A diagnosis of vision loss can be devastating, or it can offer a sense of relief. it should neither be hidden from your child nor the focal point of everything they do. I have several friends who struggled so unnecessarily as adults because their parents chose to withhold their child’s vision-loss prognosis from them altogether or denied their child’s expressions of frustration about not being able to process visual information. Others struggled to learn the life skills their siblings learned by imitation because their parents feared their lack of vision would make the tasks impossible. Many have expressed to me that they would have felt less alone if their parents had chosen to be open about their medical information, and they would’ve felt more secure in the world if they didn’t have to learn basic tasks as an adult because their parents were so “stuck” on their blindness. Growing up is enough of a challenge without having to overcome years of denial and lowered expectations.
Vision impairment or blindness is not the only aspect of your child’s growth and development. Just as your height or race or gender is one aspect to your humanity, your child’s blindness is only one lens through which they experience the world.
Your Child Deserves More than Hope for a Cure
I’m one of those people who would not want a cure for blindness if such an opportunity presented itself. Even with my limited vision, I find visual input extremely overwhelming, and the idea that I am broken because my eyes are is truly bizarre to me. And yet I truly respect the desire that some have to regain the use of vision they or their children have lost, or halt the progression of the deterioration of their visual world. Ultimately, the hope for restoring or improving vision should never be at the expense of showing a child how to live confidently and successfully in the here and now; in no way are the two mutually exclusive. Just as a child with diabetes can hope for advances in science and technology to improve their condition and the care of it as they grow older, they still have to learn to monitor what they eat, be aware of their body’s signs of illness, and advocate for what they need if they need to, a blind child can do the same. Why does blindness sometimes facilitate hope for the future at the expense of the present?
But some parents (and medical communities) look into the future and see only fear. The fear of blindness itself. Some fear blindness SO much that they gamble with their child’s life.
One cause of blindness in children is retinoblastoma, a malignant tumour that begins in the retina. Because the tumour can spread to other parts of the body, it is frequently necessary to choose between radiation and the removal one or both eyes when the child is very young. Some parents – on the advice of a medical community that frequently view life without vision is worse than no life at all – choose to take drastic measures to save their child’s vision rather than their life. Is vision really worth more than a full and complicated and messy life? More than a life like the one that you live?
And yet, there are some parents who I can only applaud. They are choosing to treat their daughter’s retinoblastoma with a revolutionary treatment. I not only admire them for their hope and belief in the progress of medical treatments, but because they want to save their daughter’s life and her vision (because, at this point, her vision seems unaffected by the tumor). A quote from her mother in the above article has stayed with me since I read it: “I know that Dania will be successful in whatever she does and if she does have her eye or if she doesn’t have her eye, I think she’ll be fine.”
She will be fine.
Vision is never ever ever worth more than a life.
Your Child Deserves More than Isolation
Sure, some kids are introverts, some are extroverts. I happen to be an incredibly outgoing introvert, which confuses people on many levels; it wasn’t until I was in my mid-twenties that I truly began to embrace my introverted personality, and I find myself better for it. These days, I’m an adult, and I choose when and with whom and for how long I interact. But when I was growing up, I was greatly encouraged to be social, and there were many neighborhood children who were willing to hang out with me. Sure, I didn’t “get” cartoons – even as a child, my idea of “entertaining” TV was an episode of “Jeopardy!” with my parents before bed – but when I had more vision I was more than content to rollerblade or ride my bike or traipse around the neighborhood with my friends. When it came to school, I was content to do my own thing on the playground – sometimes with other kids, sometimes without – but I didn’t make a solid group of friends until high school. I hung out with the science nerds who were more content to get good grades than to party on the weekends, and that suited me fine.
But even as a teenager I noticed how frequently my other blind friends isolated themselves behind books and games and computer screens – not necessarily because they wanted to, but because they felt too awkward to approach their peers (and, in Canada, most of your peers are people who can see). Sure, even the most outgoing person faces insecurity about how they are perceived, and I would never presume that unhealthy or bad “friendships” are better than no friendships at all. But many of my blind friends were left on their own in their rooms to read or chat online or otherwise isolate themselves while their siblings were encouraged or supported to go out there and hang out with their peers. As an only child who saw many sibling dynamics play out, those between my blind friends and their sighted siblings – and how their parents frequently treated their social development – stood out in stark contrast to me.
Of course, social development can never and should never be forced. I hated it when a teacher singled me out (on the rare occasions they did) for other students to work or play with me. My friend Meagan has poignantly described the dynamic she faced as an introvert who was strongly encouraged to go make new friends, and I would never belittle “Internet Friendship“. But she also describes the socially awkward behaviors that continue into adulthood when there is no sense of meaningful communication of any type with a peer group. And all children deserve the opportunity to socialize naturally (not forcibly) with their peers.
Your Child Deserves More than Learned Helplessness
I wrote above about how I have witnessed a troubling pattern of parents doing everything for their blind child. Of course, there is always a learning curve to mastering new tasks – whether you’re sighted or blind, a child or an adult – but never giving a child the freedom to succeed or fail doesn’t enable them to learn the skills they will need for adulthood. My friend Holly wrote about parents being completely unaware of the advances in technology that have enabled blind people to live, study and work independently and effectively. Of course, not everyone is going to be aware of everything out there, and not all technology is great, but even having an awareness of what’s on the market can greatly increase the future prospects for your child. But a more troubling conversation was detailed in Holly’s post, particularly as it pertains to parents cleaning up after their blind child, even going so far as to enable their child to spit toothpaste into the bathtub instead of the sink because it would be easier to clean. When it was pointed out by blind adults that such behavior is not only socially inappropriate, but sets a very low expectation for a blind child, there was a tone of defensiveness so strong that some chose to leave the conversation altogether.
OK, so you don’t go that far… but how often do you swoop in at the first sign of your blind child struggling with a skill or task? Do you tell them you don’t want them to cook in your kitchen, travel independently, or try a new hobby they might enjoy? I know many blind children – who are now blind young adults – who still struggle to learn new skills or try new things because they spent so many years being told “no”… for no other reason than because they are blind. Some teach themselves how to live independently, others learn these skills at a training program far away from home, and still others simply allow this dynamic to continue.
It should never be this way.
Do you hope for good things for your sighted children? An education, a place of their own, a life partner, children, travel, a good job, a healthy social life, hobbies they enjoy? Most parents do. Any and all of these things are possible for your blind child as well, and you have the power to either stifle them or feed them until they grow into beautiful fruition.
There are many blind adults who have come from environments like mine, like Meagan’s, like Holly’s, and those that have struggled with the family dynamics I’ve listed above. Many of us are open to talk, to listen, to answer questions. Some of us may know what it’s like to be a parent; some of us don’t. But we know what it’s like to be blind, and many of us would be open to helping you help your blind child flourish and succeed.
You make one good point after another in this excellent piece.
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