What Makes them Whole

(Note: I wrote this back in the Summer of 2008, swore I had published it somewhere, but can't seem to find it. So, my apologies if you've read this already, but I figured it was worth re-posting anyways! Enjoy - Liza)

There are so many times when I've wanted to give up the fight against racism. There are many of my friends and a few of my favorite bloggers who have. There are days when I sit at work thinking, "Is this worth it? Can we really heal? Can we really learn? Move forward?" There are days when I want to scream, "I quit!"

Thankfully, I know that there is at least one week during my race-filled year when I do recharge and when I am humbled. This past week, I spent our 2nd visit to Camp Sunshine, a retreat camp for families with children with life threatening illnesses. My daughter was diagnosed with cancer just a few weeks after her 2nd birthday. It rocked our world. It changed our lives. She was diagnosed with retinoblastoma - a rare eye cancer that resulted in the removal of her right eye, 6 months of chemotherapy, and dozens upon dozens of doctor's appointments, hospitalizations, and tests.

I tend to link disability activism with racism activism because I believe that, at it's core, our goal is to raise children who treat others like human beings in this world.

Coming to camp has been a fantastic experience because "camp" is the place where we all feel normal for a week. Retinoblastoma children get to be in the majority. They get to experience privilege. They get to experience power. Confidence. Support. Every family that attends that week has been affected by retinoblastoma. Some children have both their eyes, having sucessfully treated their cancer with laser, radiation, or chemotherapy. Some children have lost one of their eyes. Some children have lost both of their eyes and navigate our sighted world completely blind. Each family has a slightly different story, but at the heart of our experiences is cancer in our children. Families from all over the country fly in to be together, to heal, to relax, and to be in the majority for a week.

One of the many things that I find interesting about coming to camp is that race, ethnicity, geography, socioeconomic status, and gender all seem to fade away. It's a place where people find that they are bonded by their experiences with cancer, rather than the identity labels we are faced with outside of this little heaven. For most of my year, I talk about race, diversity, sexism, etc., and for this one week, none of that even enters into my mind. We are all united by cancer. Our conversations are guided around the "cancer lens" through which we all see the world. And, for many of us, that cancer lens has given us a strong faith in the human spirit.

For 51 weeks out of the year, my daughter lives in the numeric minority. She is different than any other child she plays with at school and at home. She doesn't interact with any other children with a prosthetic eye; and, outside of the hospital, we never meet any other children her age with cancer. Camp is where she feels normal, where she is in the numeric majority. Camp is where she doesn't have to worry about dumb things people say when they notice she only has one eye. She doesn't have to worry about what people will say if there is goop on her eye or if her prosthesis happens to pop out while she is rubbing it. Camp is where kids talk freely about chemotherapy, about their "special eyes", and about their radiation. And, camp is where, if they choose, they don't ever have to talk about it at all.

Camp is also where my daughter learns how to interact with children who are Picture 1differently abled. She has made fast friends with two girls , Tacey and Mayci, who both lost their sight at around age 7 from reoccurances with retinoblastoma. Through their stubborness and their insistence that they not be perjoratively treated as "blind kids", Tacey and Mayci defy stereotypes. They defy preconceived notions about blind children. They set a new standard, a new "normal", and a new understanding of how high our children can soar if we give them wings rather than weights. Tacey barrel races horses in her homestate of Texas. Mayci plays softball on a sighted team (and, when given the option of having a "beeping sound" signal an approaching softball, she made the officials turn off the beeping because it was annoying her!). Parents and kids watch in awe as these two little blind girls actually lead each other around hand-in-hand through the camp grounds (which, yes, gives new meaning to "the blind leading the blind.").

At first, my daughter was afraid of Tacey and Mayci with their white canes and the blank, unresponsive look in their eyes (they both wear prosthetic eyes). But, Joli really wanted to make friends with these two girls. When the girls would walked by, Joli would wave at them and, in her smallest voice, say "hi." This happened a number of times, but I just watched to see how she would respond, react, and adapt to her method of "waving hello" to a couple of blind girls. Eventually, Joli grew discouraged and their un-reciprocated "hello" and said to me, "Mommy, I don't think I like Tacey and Mayci - they never say hello to me. I don't want to be friends with them." We had to explain to her that "they can't see you waving to them, Joli. You have to actually say 'Hello, Tacey and Mayci! This is Joli and I am in front of you waving.'"

Simple, right? Right.

We practiced saying, "Hello, Tacey and Mayci! This is Joli saying HI to you!" Joli tried that method the next time she saw Tacey and Mayci. They, of course, said "Hello, Joli!" and were so excited to make a new friend. Tacey and Mayci began to feel Joli's hands, her face, her coarse curly hair, and her glases. They also felt Joli's smile that was stretched from ear-to-ear in pure happiness! Since that day, the girls have been inseparable and even keep in touch during the school year. It was that easy....

This year, our second daughter was now old enough to experience camp with her sister. Of course, the first kids we saw when we pulled up to camp were Tacey and Mayci. Joli hopped out of the car, announced she was there and invited the girls to touch her -- feeling the change in her height, the shape of her new Hannah Montana glasses, and her tight braids that stretched from the front of her head to the back. Once the girls reacquainted themselves, Joli brought her 2-year old sister, Jada, over to meet the girls. When Jada first saw Tacey and Mayci, she kind of freaked out. They were touching her face, touching her hair, and "seeing" Jada with their hands. I watched Jada's body tense up and tears well in her eyes. Joli felt it, too. Joli, the now experienced 4-year-old-big sister, held Jada's hand and, in her most delicate way, explained what Tacey and Mayci were doing. Jada stopped crying. Jada stood still. Jada touched back.

Camp is special for me for so many reasons. This time around, though, it helped renew my faith in our children - for whom many of us parents/teachers/counselors/friends want to raise in an anti-racist world. As I re-read my post, I mentally substituted words related to blindness and disabilities with words that are related to race and anti-racism. It's amazing to me the connection between what we experience as a family with a differently abled child and as a family with race and ethnicity at our core. Through both lenses, we constantly learn and reinforce valuable lessons about treating people as humans.

We learned valuable lessons about making mistakes and finding ways to move beyond them. We teach and learn that sometimes we can control how we interact with others (saying "HELLO" to a blind person) and how sometimes we have no control over a situation (a healthy toddler being diagnosed with cancer). We learn that kids sometimes do know better than we do. We learn that kids make the same pre-judgements that we do, and that kids can also quickly learn how to challenge those pre-judgements. We witness that our children are more adaptable than we are. And, they are often more resilient than we are, too.

My daughters and their friends many not necessarily think about living in an anti-racist way. They just want to make a new friend. They just want to be treated kindly. They want to have the same opportunities as others have, and they truly want to share their happiness. Learning from my children gives me hope. On those days when I get so discouraged having encountered a racist person, a racist practice, and an unjust system, I think back to those first moments when my kids met Tacey and Mayci - how hard it was to feel left out and how easy it was to make a friend. They don't see one another despite their disabilities, they see one another in light of their disabilities. They have seen beauty in being different.

And they know that different is what makes them whole.

Presence Does Make a Difference

I often field questions about diversity and inclusion - especially ones like, "Well, why does it matter if a person of color is in my class?" or "What difference does it make if I have a Black professor?" or "Since I treat all people the same, why should it be important that my kids have a diverse group of friends?" I believe that the presence of people with diverse backgrounds, needs, abilities, etc., changes the conversation and ways we do things simply by their presence. In an exercise I do in workshops, I ask participants to move around a room and talk to a different person every 30 seconds or so.  It requires an ability to physically move quickly AND an ability to filter sounds easily (the room gets quite noisy). Those are just the surface needs. The exercise also requires people to be somewhat extroverted, comfortable with asking un-comfortable questions, and comfortable with answering un-comfortable questions.

The exercise ends without a hitch - usually everyone is feeding off the energy of moving around quickly and trying to get points (you receive points my talking to many people). After asking typical process questions like, "What was this like for you?" or "What was something interesting you learned about another person in the room?", I then follow up with these types of questions:

  • "Is there anyone was physically challenged by this exercise?"
  • "Is there anyone for whom hearing was a challenge in this type of room?"

I typically am working in a room of able-bodied participants; and I tend to co-host this workshop with a friend of mine who uses hearing aids. She often shares how this exercise would have been extremely difficult for her to filter out individual voices in such a noisy room. I then share that, due to chemotherapy, my own daughter would have difficult with this exercise since she cannot filter voices well in a loud room. This type of exercise -- given that you earn points for moving around quickly -- would also prove unfair for anyone who might have mobility challenges. By design, this exercise creates advantage.... and ideally, it helps to highlight to others that we tend not to think about that advantage unless we have others in the room who are unfairly disadvantaged because of it.

picture-11

I am loving this year's American Idol series. While, yes, we do watch it as a family, it particularly hits home for us as a family with a visually impaired child. Scott MacIntyre, a top 12 finalist, is raising our awareness of how we do things.

Millions dream of making it to the final rounds of American Idol but for Scott MacIntyre, the dream has become reality. Born with severe vision loss from Leber congenital amaurosis (LCA), Scott is an incredibly gifted musical performer who has made it to the Top 12 on American Idol. With his remarkable talent, Scott is bound to make it far in the competition, and we need you to support him as he shoots his way to the top!

An Arizona State University graduate, a Marshall scholar, and a Fulbright scholar, Scott learned to play the piano at the age of three.  His piano professor, Walter Cosand, said, "He's always been able to do what everyone else could do and many things no one else could do. A lot of things he does are very remarkable, even for someone without a disability."

Scott also has a sister, Katelyn, who has lost her vision to LCA. With their brother Todd, the three siblings have made a splash performing as the MacIntyre Family Singers. Scott even shared his talents with the FFB family when he performed at the opening luncheon of the 1998 VISIONS Conference in Chicago.

Not only do we have a visually impaired child, many of her friends (at least the ones we see over the summer in a special camp) are also visually impaired. So, the language that Ryan Seacrest uses when Scott MacIntyre is on stage is so familiar to us. Ryan Seacrest describes what direction Scott is facing, he details that Scott is receiving a standing ovation, and he uses physical touch (likely already negotiated -- side note: it's considered very rude to just come up to a visually impaired person and touch them; you approach and ask permission prior to touching someone!) to guide him when on stage. It's something the American Idol host has never had to do in the 8 seasons the show has been on the air. While not explicitly drawing attention to Scott's challenge, his very presence raises our awareness of a community that has not gotten exposure in mainstream media.

Yet, it's a learning process. Because we are so used to speaking and working with able-bodied folks, we still slip. So, last night, I cringed as Ryan Seacrest told all of the finalists to "come to the middle of the stage!" at which point everyone came running down the stairs and hugged one another in the center of the stage. And, up in the left hand corner of the screen, there was Scott MacIntyre -- standing still, not moving, and stuck. There were no handrails on the stairs, and Scott was indeed on the top of the risers. After about 20 seconds (which, to me, felt like 20 minutes!), someone came running out from backstage to guide Scott to the center of the stage where he could join his fellow finalists.

Scott's success in American Idol -- and the ways in which his very presence raises our awareness -- is so important to the conversation about how we benefit from having diversity in our lives. It requires us to think about ways in which we assume that "everyone is like us". In the disability circle, specifically, it raises our awareness of ways in which we are blind (my own pun, intended), to the assumptions that everyone does things just like us.

Just like us. Note that I didn't write "the assumptions that everyone can do things", but rather that "everyone does things just like us."  My daughter can jump, run, play sports, sing, walk, participate in just about everything else that any visual child can do ... she just doesn't do it like everyone else. Go check out a "blind baseball game" (there are national leagues that do exist!). Listen to how conversations are built around faith and religion when there are Christians, Jews, and Muslims all in one room as opposed to when those groups are in isolation. Having different types of people and experiences requires us to take into consideration how others engage in the conversation, activity, and process.

So, do I think it matters if someone has a Black professor? Yes. A group of diverse friends/co-workers? Yes. Opportunities to dialogue across faith traditions? Yes. That there is diversity in decision making positions? Yes.

Experiences that require us to work with different types of people bring a new level of awareness to how we navigate through our own world. When we aren't challenged to see things outside of how we do things, we don't suffer. American Idol has been just fine in the past 7 seasons. But, this season - with the inclusion of a very talented and deserving artist - has hopefully highlighted ways in which we take for granted that OUR way is the ONLY way.

What Makes Them Whole

There are so many times when I've wanted to give up the fight against racism. There are many of my friends and a few of my favorite bloggers who have. There are days when I sit at work thinking, "Is this worth it? Can we really heal? Can we really learn? Move forward?" There are days when I want to scream, "I quit." Thankfully, I know that there is at least one week during my race-filled year when I do recharge and when I am humbled. This past week, I spent our 2nd visit to Camp Sunshine, a retreat camp for families with children with life threatening illnesses. My daughter was diagnosed with cancer just a few weeks after her 2nd birthday. It rocked our world. It changed our lives. She was diagnosed with retinoblastoma - a rare eye cancer that resulted in the removal of her right eye, 6 months of chemotherapy, and dozens upon dozens of doctor's appointments, hospitalizations, and tests.

I tend to link disability activism with racism activism because I believe that, at it's core, our goal is to raise children who treat others like human beings in this world.

Coming to camp has been a fantastic experience because "camp" is the place where we all feel normal for a week. Retinoblastoma children get to be in the majority. They get to experience privilege. They get to experience power. Confidence. Support. Every family that attends that week has been affected by retinoblastoma. Some children have both their eyes, having sucessfully treated their cancer with laser, radiation, or chemotherapy. Some children have lost one of their eyes. Some children have lost both of their eyes and navigate our sighted world completely blind. Each family has a slightly different story, but at the heart of our experiences is cancer in our children. Families from all over the country fly in to be together, to heal, to relax, and to be in the majority for a week.

One of the many things that I find interesting about coming to camp is that race, ethnicity, geography, socioeconomic status, and gender all seem to fade away. It's a place where people find that they are bonded by their experiences with cancer, rather than the identity labels we are faced with outside of this little heaven. For most of my year, I talk about race, diversity, sexism, etc., and for this one week, none of that even enters into my mind. We are all united by cancer. Our conversations are guided around the "cancer lens" through which we all see the world. And, for many of us, that cancer lens has given us a strong faith in the human spirit.

For 51 weeks out of the year, my daughter lives in the numeric minority. She is different than any other child she plays with at school and at home. She doesn't interact with any other children with a prosthetic eye; and, outside of the hospital, we never meet any other children her age with cancer. Camp is where she feels normal, where she is in the numeric majority. Camp is where she doesn't have to worry about dumb things people say when they notice she only has one eye. She doesn't have to worry about what people will say if there is goop on her eye or if her prosthesis happens to pop out while she is rubbing it. Camp is where kids talk freely about chemotherapy, about their "special eyes", and about their radiation. And, camp is where, if they choose, they don't ever have to talk about it at all.

Camp is also where my daughter learns how to interact with children who are differently abled. She has made fast friends with two girls , Tally and Miley, who both lost their sight at around age 7 from reoccurances with retinoblastoma. Through their stubborness and their insistence that they not be perjoratively treated as "blind kids", Tally and Miley defy stereotypes. They defy preconceived notions about blind children. They set a new standard, a new "normal", and a new understanding of how high our children can soar if we give them wings rather than weights. Tally barrel races horses in her homestate of Texas. Miley plays softball on a sighted team (and, when given the option of having a "beeping sound" signal an approaching softball, she made the officials turn off the beeping because it was annoying her!). Parents and kids watch in awe as these two little blind girls actually lead each other around hand-in-hand through the camp grounds (which, yes, gives new meaning to "the blind leading the blind.").

At first, my daughter was afraid of Tally and Miley with their white canes and the blank, unresponsive look in their eyes (they both wear prosthetic eyes). But, Joli really wanted to make friends with these two girls. When the girls would walked by, Joli would wave at them and, in her smallest voice, say "hi." This happened a number of times, but I just watched to see how she would respond, react, and adapt to her method of "waving hello" to a couple of blind girls. Eventually, Joli grew discouraged and their unreciprocated "hello" and said to me, "Mommy, I don't think I like Tally and Miley - they never say hello to me. I don't want to be friends with them." We had to explain to her that "they can't see you waving to them, Joli. You have to actually say 'Hello, Tally and Miley! This is Joli and I am in front of you waving.'"

Simple, right? Right.

We practiced saying, "Hello, Tally and Miley! This is Joli saying HI to you!" Joli tried that method the next time she saw Tally and Miley. They, of course, said "Hello, Joli!" and were so excited to make a new friend. Tally and Miley began to feel Joli's hands, her face, her coarse curly hair, and her glases. They also felt Joli's smile that was stretched from ear-to-ear in pure happiness! Since that day, the girls have been inseparable and even keep in touch during the school year. It was that easy....

This year, our second daughter was now old enough to experience camp with her sister. Of course, the first kids we saw when we pulled up to camp were Tally and Miley. Joli hopped out of the car, announced she was there and invited the girls to touch her -- feeling the change in her height, the shape of her new Hannah Montana glasses, and her tight braids that stretched from the front of her head to the back. Once the girls reacquainted themselves, Joli brought her 2-year old sister, Jada, over to meet the girls. When Jada first saw Tally and Miley, she kind of freaked out. They were touching her face, touching her hair, and "seeing" Jada with their hands. I watched Jada's body tense up and tears well in her eyes. Joli felt it, too. Joli, the now experienced 4-year-old-big sister, held Jada's hand and, in her most delicate way, explained what Tally and Miley were doing. Jada stopped crying. Jada stood still. Jada touched back.

Camp is special for me for so many reasons. This time around, though, it helped renew my faith in our children - for whom many of us parents/teachers/counselors/friends want to raise in an anti-racist world. As I re-read my post, I mentally substituted words related to blindness and disabilities with words that are related to race and anti-racism. It's amazing to me the connection between what we experience as a family with a differently abled child and as a family with race and ethnicity at our core.

Through both lenses, we constantly learn and reinforce valuable lessons about treating people as humans. We learned valuable lessons about making mistakes and finding ways to move beyond them. We teach and learn that sometimes we can control how we interact with others (saying "HELLO" to a blind person) and how sometimes we have no control over a situation (a healthy toddler being diagnosed with cancer). We learn that kids sometimes do know better than we do. We learn that kids make the same pre-judgements that we do, and that kids can also quickly learn how to challenge those pre-judgements. We witness that our children are more adaptable than we are. And, they are often more resilient than we are, too.

My daughters and their friends many not necessarily think about living in an anti-racist way. They just want to make a new friend. They just want to be treated kindly. They want to have the same opportunities as others have, and they truly want to share their happiness. Learning from my children gives me hope. On those days when I get so discouraged having encoutered a racist person, a racist practice, and an unjust system, I think back to those first moments when my kids met Tally and Miley - how hard it was to feel left out and how easy it was to make a friend. They don't see one another despite their disabilities, they see one another in light of their disabilities. They have seen beauty in being different. And they know that different is what makes them whole.