Prior to working in the field of autism and disabilities, I effectively knew nothing about disabilities and my interactions with people with disabilities was pretty limited. Even though one of my best friends, Jonathan, used a wheelchair, I still was really intimidated by it all - do I ask him about his disability? What is okay to talk about and what isn't? Am I supposed to ask him if he needs help or should I just always let his mom or aide help? I always seemed to be awkward and weird about it all. To put it bluntly and to my shame, people with disabilities made me uncomfortable.
And then I took a job as a project manager for an organization focused on disabilities. We aren't a direct service provider, so our staff is not made up of clinicians or therapists directly providing interventions and supports. Rather, we focus on equipping and supporting those people who are direct service providers, educators, parents and family members. I've been on staff there for over 10 years now, which seems wild to me on so many levels. Like, I'm still in shock that I've been an adult long enough to have had a job for that length of time. I served as a project manager in early childhood for a little over 6 years before I moved full-time to our conference and events team, assisting in the coordination of our annual national conference, which hosted a little over 6,000 people online last year.
One of the tasks for the conference is coordinating our hosts, writing their scripts, and then assisting our video production team in the actual filming of all the segments we record in advance of the live event. This is how I wound up in Cleveland awhile back. We had selected a group of people with disabilities to serve as our hosts for our online audience. Some of them were in wheelchairs, some were on the spectrum. They each had their own unique personalities and needs, unique ways of communicating, whether through a device or verbally.
I remember one particular moment when one of the hosts, Patrick, asked if he could share a poem he had written as part of our "Artist Spotlight," a feature within the conference showcasing individuals with disabilities and their musical/artistic abilities. He had difficulty speaking for lengthy periods of time and he had visual impairments so it was difficult for him to focus his eyes on the paper. So, we had worked out a method where I would read a line out loud and he would parrot it back. I would read the next line, he would parrot it back, and so on, until we read through the entire poem line by line. It was a personal poem, reflections on his experience as a person with a disability, but it also a bit of battle cry, a mustering of the troops, encouraging others with disabilities that they have value and worth.
As I listened to Patrick say that poem, I thought my heart might burst. I was overwhelmed with pride at Patrick and the others, all that they were accomplishing in life (not in an "inspiration porn" kind of way but just like, "Hey, look at what my amazing friends are doing!"), but I also felt fiercely protective of them as a few stray tears rolled down my cheeks.
Because in that moment, I wanted to grab the world by the shoulders and say with every ounce of conviction in my body, "YOU ARE MISSING OUT. I want you to know these people. I want you to see how wildly funny they are, how wicked smart, and how perfectly capable they are. My friends matter and I want you to see them for who they really are - not for their disability. And when you choose to dismiss them or treat them as less-than, then you are missing out on some pretty freaking amazing human beings."
People with disabilities are like so many other marginalized communities - overlooked, alienated by the world around them, dismissed, looked down upon, forgotten.
But they have worth and they have value and they are worthy of being seen.
When my friend Jonathan passed away 11 years ago this week, I remember standing in the receiving line at his funeral, waiting to talk to his parents, sister, and brother-in-law. I hugged his parents, turning into a puddle of messy tears. And then I got to his brother-in-law. Jesse hugged me and then he said something to me that I'll never forget:
"You saw past his wheelchair."
Yes, I was very aware of my friend's wheelchair, but I was also very aware of how wise he was, how observant he was, what a hard worker he was. I was aware of how he always seemed to pick up on the most random details in movies. I was aware of how joyful he always seemed to be. I was aware of how much he loved Jesus. Jonathan was far more than his wheelchair or his disability. That chair was not the sum total of his life. It didn't define or explain everything about him. It was only a part, a significant part, but a part nonetheless.
And that is the truth for anyone with a disability. It is not the sum total of who they are. So, don't miss them. Don't overlook them. Don't miss out on these wildly talented people who are smart and funny and clever and courageous. They are worthy of your eye contact, worthy of being noticed, worthy of being treated like equals.
Not everyone with a disability has a wheelchair because some disabilities are invisible, but whatever their disability may be - see past it. See the person created in the image of God, the person who has unique worth and purpose.
PS: And please, for the love of all that is good, stop using the "R" word.
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If you want more insights into disabilities, I recommend the following:
Crip Camp - Netflix documentary that I think every human being should watch
Uniquely Human - book by Barry Prizant
In A Different Key - PBS documentary tracing the story of the man who was the first person ever diagnosed with autism
"The Indispensable Ministry of Disability" - article from Gospel-Centered Discipleship
"When the Nest May Never Be Empty" - article written by my brilliant and wise friend, Emily Pilkington
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