*Full disclosure: This is a rant; a rant for which I'm not expecting any Pulitzers. Please do not feel the need to leave me comments about comma splices and run-on sentences. I will delete them and send them to the place where mean comments go to die.* That said:
At least once every week or so, I have a conversation about Madeline's vision - usually about some breakthrough in technology or medicine that someone heard about. Sometimes people ask about school and braille. Madeline got her cane recently, so that's been on the docket a lot these days.
In these conversations I try so hard to find delicate ways to share my very sharp opinion on education for the blind. But this is my blog and I can do with it as I please - so today you're going to get the undiluted version. Lucky you.
This excerpt from an article by Carol Castellano makes it crystal clear. It didn't serve to shape my opinion, but I think of it nearly every time I try to explain why we do the things we do for Madeline. The author brings to light thoughts, feelings, and philosophies that lie just below the surface - outside of our awareness but smack in the center of the issue. Pay attention to the child named "Frank" - because it very closely describes our experience with Madeline.
"A four-year-old child has entered preschool. He is highly sensitive to light and glare. His 20/400 vision makes it difficult for him to make out the print on the page in front of him. If he wears his sunglasses so that he can tolerate the indoor light, he can no longer see the page...When this little boy steps outside for recess, he is blinded by the daylight. The aide holds his hand so that he does not fall off a curb or trip over a tree root.
There is no Braille and no cane in this child's life because he is not blind.
A girl sits in a fourth-grade classroom, an aide by her side. The aide retrieves the child's books, reads to her, accompanies her in the hallways, and eats lunch with her in the school cafeteria. "Why does the aide walk with her and read to her?" I ask. The mom explains, "Well, those things are very visual." There is no Braille and no cane in this child's life because she is not blind.
A fourteen-year-old high school freshman has difficulty navigating the hallways and stairwells of his new school. Someone has suggested placing bright yellow tape at the top of each stairway. Someone else recommended hiring a full-time aide to keep the boy safe and also to take notes for him, as he cannot see the board and really can't read his own handwriting...
There is no Braille and no cane in this boy's life because - well, you know, he is not blind.
These stories are real - only identifying details were changed. When the parents of these children called, they wanted me to understand that their child WAS NOT BLIND!
Frank is a child with albinism, a second-grader. He uses the vision he has very well, but his mother recognized that it might not work for him later when the print becomes smaller and more dense. When his mother suggested at a school meeting that Frank should learn Braille, the teacher of the blind responded, "Oh, I'd hate to do that to him." She went on to explain to the school staff that Braille is not a quick thing to learn, that poor Frank would have to learn all different grades of Braille and THEN would have to learn another code for math and even another system for music!
When it came time to discuss mobility, Frank's mother related how Frank tripped over small rises in the terrain, used his foot as a feeler in unfamiliar places, and had run headlong into a glass sliding door at his aunt's house. The mom thought Frank should learn to travel with a cane. The O&M instructor explained that Frank didn't qualify for cane use and, what's more, he needed to trip over things so that he would learn to pay more attention. At the end of the meeting, the Director of Special Services contributed her expert opinion, though they'd never had a visually impaired student in the school district before. She'd done her research, she told us, contacting directors in other school districts. "NOBODY," she proclaimed, "was giving Braille to kids who could see. AND," she continued, "I found out Frank would read the Braille with his eyes anyway. They'd have to BLINDFOLD him to get him to read the Braille with his fingers. I just can't get that image out of my mind," she cried, "that poor little boy sitting at a table blindfolded." Then, turning coldly to the mother, she hissed, "I just don't understand why you would want to make that child blind."
In that statement lies the crux of the resistance to providing training in nonvisual skills to children with partial sight. Contrary to the sentiment expressed in a favorite slogan of ours, to most of the general public, it's still BAD to be blind. Current research continues to find that people fear going blind even more than they fear their own deaths! So I guess it's natural, or at least predictable, that when parents hear from the professionals that their child is NOT blind, they feel relieved. "Thank goodness she's got that little bit of vision," the doctors say. "You're lucky," the teachers tell them. "She won't have to learn Braille." "He's got a lot of travel vision. He won't need a cane." The child is encouraged to use his remaining vision and is rewarded by making Mom and Dad happy when he is able to see."
That last paragraph is SO TRUE. Because of Madeline's partial sight, people gush when she sees something. They cling to every instance like a life preserver. "She can see that!" They laugh, and pat her on the back, and praise her. Now, to be fair, it really is exhilerating to learn what she can see. We certainly rejoice in what we consider "victories" too. The rub comes when people take it a step further and say, "Well, why can't she just use such-and-such technology?" "She gets around fine!" "If you have to blindfold her to teach her to use the cane, then maybe she doesn't need it! Isn't that great!"
What I've learned is this. There is a stigma attached to braille; stigma attached to cane use. Somehow, people think that braille makes you blind. They think, if you have to use a cane, it's official: you don't just have low-vision, you're blind. And blind is bad.
Newsflash: Braille doesn't make you blind. Biology makes you blind. Braille makes you literate. A cane doesn't make you blind. Anatomy makes you blind. A cane makes you independent.
I've said over and over how grateful I am to have grown up with a Dad who couldn't walk. I know that sounds crazy to a lot of people, maybe most people. And don't get me wrong, as a child I prayed every night EVERY NIGHT that my Dad would gain the use of his legs, but it prepared me for Madeline's diagnosis more than any other single event in my life.
It's okay if Madeline never gains more vision.
There are parents out there whose stomachs just turned - who cannot BELIEVE that a mother could say that about her child - but I mean it. It's okay.
IT'S OKAY.
Do I want Madeline to see? Of course. Do I still pray for that? Sometimes. Sometimes I cry and beg and try to bargain with God. But I know that it's okay to be blind; I learned that from my Dad. Sure, it sucks, and life's not fair, but blindness is not a death sentence. We have to get rid of that stigma, because blindness is a lot less crippling than the stigma. Madeline needs braille, not pity.
The way I see it is this: my job as a parent is to make my child independent. If a cane will help Madeline with depth perception and outdoor travel, if it will compensate for a limited field of vision - why would I deny her that tool? Because I'm embarrassed? Because I don't want her to appear different? Because blind is bad?
If Braille will enable her to read with more comfort, ease, and speed - if it will enable her to participate in public speaking in a way that enlarged print never could - why would I deny her that tool? Because it's hard? Insisting that she use print because "she's not blind" is unfair. You can say that it's for the sake of "equal treatment" or for "the child's good" until you're blue in the face - but really, it's because we're afraid. Or in denial. Or we've bought into the stigma. You know what's good for the child? Literacy and independence however you can get it.
Yes, Madeline can see. She can see more than we EVER thought she'd be able to.
But her vision, which cannot be corrected or improved, is currently 20/800 at 3 feet (legally blind is 20/200), and that's in her good eye (she has no useable vision in the other). She has a significantly limited field - no peripheral, and severely limited central vision.
So what's wrong with blindfolding my child to teach her nonvisual skills? It's not cruel; it's parenting. It is no different than making her eat vegetables when she doesn't want to, or do math when she'd prefer to play outside. That's life; that's parenting; and that's why I'll fight for braille.
As much braille as we can get our hands on. Because my job is to raise Madeline as God would have me to - to do my best to train her into a successful, independent human being. The means might look a little different for us than they do for other parents, but the goal is the same. And pigs will fly before a let a little bit of stigma keep me from what I believe is responsible parenting.
Use your cane proudly, little one. Chin up so we can see your pretty face. Blind isn't bad, it's just blind. And you are the sweetest darn preschooler I've ever known.
UPDATE: It should be said that we've encountered little to no resistance from educators - all of Madeline's teachers and therapists have been eager to give her both braille and O&M. (The battle there is for time and resources - understandable, as both are limited.) Mostly, my thoughts and comments are in response to parents who consider using a cane to be the WORST CASE SCENARIO, who will consider braille only as a very last resort, when all magnification devices and technology have failed, because somehow it's got a big scarlet B for Blind on it. I have a hard time understanding parents who are offended when teachers suggest their children might need testing, help, or some special service. It seems to me that they want so badly for their children to be typical that they refuse to embrace tools like braille, speech therapy, behavior therapy, study help, medication, etc. My point, really, is that there is no shame in getting help. My frustration is with the stigma - in order to make real progress towards inclusion and independence, the stigma's got to go.