Opening minds to acceptance need not be negative. My journey with Wil’s diagnosis is likened to a flower blossoming through a crack in the concrete, unfolding, stretching, growing, reaching, and opening fully to the sun. At first unbelievable, then freeing, and now a natural part of life.
Disability is a natural part of the human condition. Yes, you can argue I will get trampled again and again. Yes, I will be under the concrete again finding a new space to grow. But herein lies the difference. The concrete is real, but I don’t have to stare at it. I now know there is always a crack in the concrete somewhere because I have experienced it.
I’ve experienced bumping my head multiple times in search of the sun. I know that bumping my head — now in a progressive way — is simply part of the process in reaching a glorious opening to expand with the sun.
It hurts no less to continually bump my head. But I know, very deeply within me, that the more flowers I bloom, the more the natural human condition of people with disability will be recognized as a beautiful, natural part of life, and to be appreciated as such.
There is room for all of us to grow, but only when we open ourselves to fully supporting this growth that blossoms in its own natural way and time.
He’s a 16-year-old kid. He wants to be a 16-year-old kid the way he is, just like any 16-year-old kid wants to do things the way they do.
Why should a kid with prosthetic legs be an inspiration when he plays baseball? He just wants to play baseball, and that’s the way he does it. Yes, it’s more challenging than if he had two flesh and bone legs that ran when he told them to. But the way he plays is normal for him.
When I narrowly viewed how things should be, I unintentionally one-dimensionalized people. Then when I had reason to truly care, my heart cracked open to multiple ways of being. That is true joy once experienced; it’s very freeing. Challenges don’t disappear but my mind is no longer caught in what should be, because Wil is exactly as he should be. Boys playing baseball, no matter how they get to the bases, are how they should be.
Whenever I define what should be, the deep value of the many ways things can be is lost in my angst. The value of a multitude of joys is equal to the value of true inclusion. But a change in thinking doesn’t happen until we have a reason to care.
Someone once said to me about Wil, “ but don’t you want him to be the best he can be?” This was in relation to a claim certain supplements could help take some of his Down syndrome features away.
Of course, I want Wil to be the best he can be. But what I don’t want, with all the feeling I have within me, is for him ever to be ashamed of who he is. Down syndrome is part of who he is. Not a disease to be erased, or fixed to look more “normal.”
Why is it that we see people with disabilities as people to be fixed? Why is it so hard to see the value of an individual who does things in a way we hadn’t considered?
I saw a YouTube of a 12-year-old girl with CP who used an assistive technology device to talk. When she was asked what it was like to use that device to talk, her answer was, “normal.”
Do you know a great way to miss seeing someone as their best? Not seeing value in the person as a human being exactly as they are. Not seeing there are many versions of best, no matter how many legs, arms, chromosomes, etc. you have.
I mean, look at those almond-shaped eyes. Why would I want to fix anything he is? 💙
If I were to sum up my writing surrounding Wil in 7 steps it would be:
Wil wants and deserves to be treated as you’d treat anyone. As the individual he is.
But, 47 chromosomes has an impact on Wil.
To respect him for who he is, you cannot have an idealized view of what disability is. When you work closely with people with disabilities it is challenging. And here’s why…
You have to step back and try to understand what is driving the behavior. This is the single most challenging aspect. Whether we realize it or not, we impose our thoughts on others. To step back with an open mind and analyze the situation is incredibly challenging at times. Especially if it’s reoccurring, or you are in a hurry, or there is no answer you can discern due to communication barriers.
But here’s the glory—- when you do step back, when you do suspend your own thoughts and open your mind to what may be happening, it’s like a boulder blocking your heart was shifted. You are lighter but stronger. A view of life opens that you didn’t even know existed. It’s an awakening.
But this shift is so challenging, many of us — including me — need someone with a disability to personally impact their life. As much as it pains me to say that, it’s true.
Without the personal impact, views of individuals with disabilities are either seen with feel-good idealism or not thought of much at all.
Don’t idealize away the challenges. They are exactly what gives us strength to move boulders and see an elevated view of humanity that sadly many of us won’t do until we have to. I thank God every day that I “had to” because I love this elevated view I never knew existed. 💙
Picture day was today. Last night Wil took a shower in preparation, and spent extra time choosing a shampoo. I heard him talking to himself as he smelled each one.
“Ewww! Too strong. Hmmm, this is old. Mmmm, smells good.”
With his sisters gone to college, Wil can safely use what they’ve left behind without swift sibling reprimands. When his sisters were home, the slightest change in position of their shampoo, conditioner or body lotion bottles was expertly detected.
Wil eventually, and excitedly, exited the shower, put on his fluffy blue robe, and walked directly to me. He bent his wet head so I could smell his freshly showered hair, then lifted his arm for me to smell his fresh skin. Wil shared no words with these actions. This routine went back to the days of him refusing to bathe, and me adding positive reinforcement when he did. This same routine also remains with him blowing his minty fresh breath in my direction after he brushes his teeth.
“Oooo, fresh!” Is my expected, and routine reply. He’s 16 years old now, and we really don’t need this routine anymore, but it makes us both laugh, so we keep it up.
He combed his hair, played it into a Mohawk, “like this Mom?” We laughed again, he put on his pajamas, and he went to bed.
I’m not sure what happened overnight, but he was a different version of himself this morning. I had to coax him out of bed, then he wouldn’t get dressed. My guess would be overwhelm. He typically wears a favorite dressy shirt on picture day, but today he picked a black cotton Luke Bryan shirt that wasn’t exactly unwrinkled. He was muttering to himself, which meant he knew he picked this shirt to pick a fight. He wanted me to tell him to pick something else. And it would be him flat out refusing to do anything.
If he had simply picked out a shirt, without the muttering, I would have asked him to go back and take another look. I would help him if he wanted. And he’d do that, and come out saying, “This one, Mom?”
But I knew this muttering mood well. And it’s one where I give him space to work through what he needs to. And that’s what I did. Almost. His hair dried funny in the back. So I waited until he was eating breakfast (aka when he was happy and distracted) and put a wet comb through it.
“Mooooooom!”
“Wil, I know you’ll be disappointed if your hair is sticking up.” As he wears a baseball cap every day, I asked him to wait to put it on until after pictures. Well, in the mood he was in, you can guess what he did. Hat on.
“Wil, if that’s what you want to do, fine. But think about when you get your pictures and your hair is all sticking up. Is that what you want?” I asked. He pondered this.
“Gel, Mom.” He said. Vanity does have its perks!
Wil is a wild card, with a few wild hairs! I never quite know what will offset him, so I’m always reading his cues. I think that’s why I enjoy our predictable routines — oooo, fresh!—-even if he’s outgrown them. When we make it to the car every school morning, and he starts singing, it’s like I scored all aces, and we both turn up the volume on our voices and laugh, as we always do, at our ridiculousness.
Should people without disabilties play parts in film of people with disabilties?
There have been some impressive performances of such cases. But then I thought, if Wil were an actor, would he be hired to play any part but of the person with Down syndrome? That would be summed up in two letters: NO. And if he were an actor, how would I feel about a person without Down syndrome playing his part? How would he feel? I would be appalled on many levels. No matter how much that actor studied, how would they really know? Who better to play the part, to raise true awareness, and to give a paying job to, than someone who lives it.
In today’s age, what does disability representation in film look like? There is definitely what coined by Stella Young as “inspiration porn.” As a society, are we as progressive as we claim to be? It’s definitely something to give thought to. So I did some research. Then I wrote about (see below) for my Special Education class (please feel free to comment, I’d love to hear thoughts):
Time to Share the Mic: Authenticating the Voice of Disability in Film Turner Classic Movies (TCM) played a double feature every Sunday this past July – a total of 10 movies for the month – showcasing people’s experiences with disabilities. The series, which coincided with Disability Pride Month, went as far back as the silent film Deliverance (1919) about Helen Keller and her teacher, Anne Sullivan. This early 20th-century film’s symbolism of ignorance and knowledge – one wore a white robe, the other black, and both urged Helen to follow them – was ahead of the times. The real Helen Keller and Anne Sullivan made an appearance in the film. The TCM series starter was The Best Years of Our Lives (1946), wherein three war veterans returned to their hometown “who are all in different states of physical and mental distress after the war” (Fields, 2023). One of the veterans is played by a real-life war veteran, Harold Russell. Russell lost both of his hands in a wartime incident, and having the choice between plastic prosthetic hands and steel hooks, he chose steel hooks. Russell became quite adept at using the steel hooks and eventually made a training film for soldiers who had lost both hands (Sevaro, 2002). Director William Wyler, a veteran himself with severe hearing loss due to his service, saw Russell’s training film and advocated hiring Russell. Russell had never had acting lessons, and Wyler stopped producer Samuel Goldwyn from arranging them. “This was a rare case of a person with an actual disability playing a character with a disability” (Fields, 2023).
Fast-forward the film reels of time to the present day and we will find that “significant depictions of disability on film and television shows have nearly tripled over the past decade compared with the previous 10 years”(Bahr, 2021). Per a Nielson study of among 3000 titles (from television and movies) from 1920 to 2021 nearly 70% of the content inclusive of disability was in film (Nielson, 2021).
So that is great news for the authentic voice of actors with disabilities to be heard, right? In film-speak, that would be called a long shot. Only 1.9% of all speaking characters in the top films of 2022 had a disability, according to an August 2023 report published by the University of Southern California (USC) Annenberg Inclusion Initiative (Heasley, 2023). The report states that “there has been no change in the representation of characters with disabilities since this community was included in our reporting across top films from 2015. Characters with disabilities are consistently missing in film.”(Smith, et al., 2023).
With an increase of disability portrayed in film, but with less than 2 percent of speaking characters with disabilities in recent top films, who is the voice of the disabled? Have we reverted back to the silent film days of Deliverance? The answer is, non-disabled actors are speaking for the disabled. Nearly 70 Academy Award nominations and 27 wins were given to non-disabled actors for playing disabled roles. Yet, only three actors with disabilities have won Oscars: The aforementioned Harold Russell, as Best Supporting Actor in 1947 for The Best Years of Our Lives, Marlee Matlin, who is deaf, as Best Actress in 1987 for Children of a Lesser God and most recently Troy Kotsur, as Best Supporting Actor in 2022 for CODA (Brownworth, 2023).
Non-disabled actors are clearly lauded, and applauded, for their portrayals of persons with an actual disability as is evidenced by the overwhelming number of nominations and Academy Awards given to non-disabled actors in relation to disabled actors. “Even though the number of disabled characters continues to increase, approximately 95 percent of those roles are still portrayed by actors who do not have disabilities,” said Lauren Applebaum, Senior Vice President of Communications at RespectAbility (Bahr, 2021).
And what of the content of the increased portrayals in film of people with disabilities? Consider what Stella Young, who spends her day in a wheelchair, coined as “inspiration porn” in her 2014 Tedx Talk:
The little girl with no hands drawing a picture with a pencil held in her mouth. You might have seen a child running on carbon fiber prosthetic legs. And these images, there are lots of them out there, they are what we call inspiration porn. (Laughter) And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So in this case, we’re objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, ‘Well, however bad my life is, it could be worse. I could be that person.’ But what if you are that person? I’ve lost count of the number of times that I’ve been approached by strangers wanting to tell me that they think I’m brave or inspirational, and this was long before my work had any kind of public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name. (Laughter) And it is objectifying. These images, those images objectify disabled people for the benefit of nondisabled people. They are there so that you can look at them and think that things aren’t so bad for you, to put your worries into perspective (Young, 2014).
If such inauthentic portrayals of disability have the power to shift human emotions, imagine how hard it is to unravel decades of film that have trained us to think about how disability should be portrayed. “When disability is a part of a character’s story, too often content can position people with disabilities as someone to pity or someone to cure, instead of portraying disabled individuals as full members of our society,” said Applebaum. (Bahr, 2021).
Rather than placing a non-disabled person’s bias on such portrayals, or portray people with disabilities as flawed or inspirations, a boost to authentic inclusion and diversity could be made by taking actions like Wyler in The BestYears of Our Lives; advocating for a person with an actual disability playing a character with a disability. Moreso, creating space for writers and directors behind the camera who have first-hand experience living with a disability. “The inclusion of disabled talent does not happen by accident. It is critical to have representation behind the scenes to ensure better and more authentic representation on screen,” said Appelbaum. “We need people with disabilities in a position to influence storylines and narratives, help make decisions about casting and talent, and represent the disability community throughout the creative process” (Nielson, 2022).
That’s exactly why some filmmakers and actors with disabilities are taking matters into their own hands by creating films such as CripCamp and Peanut Butter Falcon. Crip Camp is a “groundbreaking summer camp for teens with disabilities. Crip Camp is the story of one group of people and captures one moment in time. There are hundreds, if not thousands, of other equally important stories from the Disability Rights Movement that have not yet received adequate attention.” Crip Camp’s release in 2020 marked the start of a campaign “whose goal was to use the film as leverage to create change for people with disabilities.” Crip Camp stands “by the creed of nothing about us, without us. For too long, too many were excluded, and it is time to broaden the number of voices and share the mic”(CripCamp.com, 2020). The idea for PeanutButter Falcon began with a conversation between Zack Gottsagen, an actor who has Down syndrome, and his friends and screenwriters, Tyler Nilson and Michael Schwartz. Nilson shared with Gottsagen “that even though he was talented and had been studying acting for years, there just weren’t many roles written in Hollywood for actors with Down syndrome (or any disability) and that there was a very small chance that he’d ever get an opportunity to play a major role.” Gottsagen replied, “Well … you guys make movies, why don’t you write one and I can be in it?! We can do it together!” (Schwartz & Nilson, 2019).
There is reason to be hopeful that, as Gottsagen so aptly stated, “we can do it together!” More films with authentic disability representation have recently been released such as A Quiet Place, All the Beauty and The Bloodshed, CODA, Creed 111, and Netflix’s Rising Phoenix, Sex Education, and Special (Fraser, 2023).
Just maybe, we are realizing that “we need more relatable, middle ground, diverse disabled characters” (MediaTrust, 2019). Bobby Farrelly, director of Champions, a 2023 movie with a predominate cast of actors with disabilities, said, “We’ve become aware of how hard it is for disabled actors to get parts in movies because they don’t read for parts that aren’t disabled, so when the character is disabled, it should go to a disabled actor” (Heasley, 2023).
When non-disabled actors are applauded and awarded for their roles as the disabled, and when audiences applaud themselves with feel-good cheers of inspiration porn, or when the emotional wheels of pity are churned in scenes of people with disabilities marginalized as flawed, broken, or lesser versions of themselves – these are the reels of superficial progress. “We’re so busy believing we are being progressive…that we’re stuck in a rut, having lost sight of the fact that to progress means to move forward” (Zacharek, 2023). It’s time to shine a light on where the cast, crew, and audience have long followed a dark cloak of ignorance and celebrated it as knowledge. It’s time to shed light on the bigger picture. It’s time to share the mic.
This blog isn’t about Wil, it’s about me in relation to Wil.
And I guess all my blogs are really about that. Because I had no clue how to raise a child with Down syndrome. And I don’t think many of us do. There are parenting books, but how many of your typically-developing kids fit those molds? Throw in an extra chromosome, with inclusion being a relatively new concept, and any road map you think you have dissipates into a mirage.
Most of my learning, rather than from books, can be likened to sitting around a campfire passing the peace pipe, except we parents are sitting in lobbies of therapy centers, or school hallways sharing stories of how to navigate governmental services, available therapies, what worked for our kids, what didn’t, and most commonly what worked for our kids one day but then didn’t the next. We all laugh at that last fact, as any sure plans have the staying power of a puff on the peace pipe.
But what’s solid is the connections I have made with those who support me on this path. What’s solid is the work I have put in to the best of my ability. What’s solid are the tear stains on my cheeks from so many hard, frustrating times when nothing seemed to work and days that never seemed would end; what’s solid are triumphs that emerged. By triumph I don’t mean always grand — though they felt that way. A triumph during one period was that Wil actually climbed out from under the table for a few minutes. When you feel directionless, and have no idea which way is up, you are willing to grab on to any sliver of light and expand it any way you can. A silver lining, no matter how slim, is always celebrated when it appears.
When I brought Wil to summer camp it was like standing at the top of a mountain and sticking a flag firmly in the ground. I looked around, and though there were more mountains around us, we had summited this one. It was not just about the day, it was a pinnacle moment; a symbol of the journey thus far.
I know my part in that, I know Wil’s part in that, and I know the friends’ I leaned on part of that. I know, deep down in my heart the worth of that.
And in one shared sentence to me about Wil going to camp the flag was lowered; the worth diminished. Of everything I did to get Wil there, of everything Wil did, of the friends and connections that were part of that journey, the sentence ignored that. The sentence was also more than just words, just like Wil going to camp was more than just camp. The sentence was a pinnacle; a symbol of the journey thus far. Like if Wil was treated as a typical kid, he would have been at that spot anyway. Not one mention of the journey. Not one word of respect for the journey. Not one word of honor for what it took to get there.
Wil is not a typically-developing kid nor will he ever be. Wil has Down syndrome. He has 47 chromosomes, we have 46. That’s not going to change. It is not a negative thing, it is not to be ignored like it doesnt exist. It’s not to be fixed, it’s not to be cured. Wil needs extra help, he needs extra time, and he needs more than I was educated to give him which is why I’ve surrounded myself with very proactive parents.
We are all truly better for knowing, understanding and honoring our friends with disabilities. I know that deep in my heart. I stand firmly on that, and I honor that. One sentence can not change that, but as I said it was a pinnacle sentence so it gave me loads of clarity.
I’ve been carrying the extra baggage of the flag-lowering type of thinking for much too long. Believing time will change it. But you can’t change what you don’t want to, and the only person you can change is you.
I’m handing the baggage back. I’m grateful for the strength of carrying it gave me. It pushed me deeper into what I respect and honor. But it’s not mine to carry.
At this realization I was hard on myself for taking that long to realize how heavy the baggage of another’s is that was not mine to carry. I mean, I could have set it down at any time.
But if raising Wil has taught me anything (and this journey has taught me a lot!), I’ve learned that it doesn’t matter how long it takes to reach certain destinations; what matters is that you do the best you know now, and keep doing that until you get where you want to go. And that extra baggage — that’s up to the owner. It always was.
Now excuse me while I step out much more lightly and enjoy the view from this incredible journey I never knew I wanted, and now can’t imagine life without!
Last night driving Wil home from the first Special Olympics golf of the season (he was in a high mood as he loves SOMI golf and was counting the days until it started again) he started calling me by my full name of Christie Leigh Taylor and cracking himself up.
“That’s Mom to you sir!” I said.
He laughed and repeated Christie Leigh Taylor several times in a row.
“Ok Willy Jimmy,” I said (Wil’s middle name is James).
“Willy Jimmy?” He asked. Then getting it he cracked up once again.
Back and forth we went— Christie Leigh Taylor on repeat and Willy Jimmy on repeat. We progressed to inserting our names into song lyrics. Then Wil came up with Christie Lee Murphy (after country singer David Lee Murphy) and about lost control of himself with belly laughs.
Wil is just so fun. There is no car ride that is without a made-up game, songs or laughs.
There is no magic formula to acceptance of our friends with disabilities.
Acceptance, in its essence, is very simple.
You don’t need to be a special person. You don’t need to be born kind or compassionate or patient. You don’t need to be energetic or inspirational.
You don’t need to be anything other than willing to open your mind to acceptance.
That’s it. You don’t need anything else. It’s simply to be or not to be.
Once you truly open your mind to acceptance, the rest will come. The new ways of thought. The adventures you never considered. The new friends you wouldn’t have known otherwise. It’s the experience, once accepted, that delivers the specialness, the kindness, the compassion, the inspiration, the energy and the patience.
But if you keep your mind closed, then you’ll never know the amazing you are missing.
Acceptance is not a natural-born talent or a skill; it’s a choice. And that choice is up to you.
A sticky, filmy, wiggly smudge snaked across my computer screen. I’m not a fan of snakes, but I looked at this one endearingly.
Just a few days ago Wil was flipping through photos on my computer. They were photos of experiences at Camp Sunshine; the camp he’d be going to this very weekend. He smiled and called out to me to talk about each photo.
“Mom, a pool! Mom, a talent show! Mom, dancing! Mom, look a stage!” Wil’s finger followed the action of each photo. As he was on Camp Sunshine’s Facebook page, he went in deeper and deeper through the years. He didn’t want to stop looking, because he couldn’t contain his excitement about camp. He wanted the experience right here, right now.
It would be his first camp away from home; 3 nights, 4 days. Clearly, he was ready. I was ready for him. I’d been trying to get him into this camp for the last 4 years. When I finally was able to secure him a space, we then had an interview with Josie, his camp counselor. When we met Josie for the first time via Zoom she said, “The bad news is it’s hard to get in. The good news is for that same reason, once you are in, you are in.” Wil can go to this camp every year for as long as he lives.
When Wil and I entered the camp grounds, the camp was swimming in counselors with blue shirts on, and I’ll be darned if I could find one of them without a smile on their faces. The counselors were loaded to overflowing with just as much excitement as the incoming campers.
Many of the campers and the counselors had been coming back for years. As Wil and I waited in the line to hand medications to the nurse, we met Pete and his mom. Pete was 27 years old and this was his 6th year coming to the camp. At least 4 of the camp counselors approached Pete calling him by name as we waited in line.
“Hi!” A woman about my age with short, spiky gray hair in a blue camp shirt said to Wil. “My name is Kathy. What is yours?”
“Wil.” He smiled at her.
“Do you like fist bumps, high-fives or hugs?”
“Hugs!” Wil said. Kathy leaned in and the two embraced.
“And who is the beautiful woman you are with Wil?”
“That’s my mom!” Wil answered.
We were approached by many camp counselors just as friendly and effervescent as Kathy. Every counselor, without exception, addressed Wil directly. (You’d be amazed how many questions I get asked about Wil when he’s standing right there!) The counselors pointed every one of their questions to Wil as you would to any 16-year-old. As it should be.
After Wil was checked in and his medication handed over, it was time for Wil to go off on his own to camp. A young counselor named Conor placed a lanyard with Wil’s name badge over his head. As Wil bowed to receive his name badge, I felt the process almost knightly.
Next was the crossing-over ceremony. Multitudes of blue-shirted counselors lined each side of a walkway that lead to the cabins. Parents were not welcome on this walk. It was only for the campers and the counselors from here on.
“Do you want a loud or quiet send-off Wil?” Conor asked.
“Loud!” Wil answered without hesitation.
Cheers erupted as Wil marched forward through the walkway, pulling his suitcase behind him, never once looking back.
I stood on the sidelines trying my hardest not to fall into a body-shaking sob. My tears though, held no sadness. I cried feeling deep gratitude for the people that create a space such as this. A place that embraces my son for all of who he is. I cried seeing my son’s independence — it was an independence we had always worked toward but was never guaranteed. Many parents work this hard and certain levels are just not reached. So we celebrate every advance we work toward no matter where it lands us. And thus far, this is where we have landed and it is to be greatly celebrated.
It truly takes a village. Wil, our family, our friends, our educators, camp counselors and all of his supports. We all created this space together, in our own ways, and his independence means celebration for him, and also for the village.
'WIL'ingness = Willing to Embrace Extra in Life 