During the Executive Committee meeting for State of Formation, the following speculation was offered: “We need to incorporate those who are disabled and we must remember do this.” I was deeply grateful for this comment and it sparked several questions for me:
- How is the voice and presence of those who are disabled valued in my community?
- How does the interfaith movement incorporate these voices?
- How do different communities value these voices?
In order to address some of these questions, I want to share a few memories from a person narrative.
***
“Something is wrong.” I was too young to comprehend, but I remember experiencing those emotions while waiting at the hospital to meet my new baby brother, Chris. Right after Chris was born, my parents took him to the University of Chicago Children’s Memorial Hospital to be evaluated. The specialists said the combination physical, emotional, cognitive and developmental disabilities had never been documented before and my parents should prepare for the worst.
My parents learned that Chris would never be able to walk and or have precision with his motor skills. He would not be able to talk. His emotional and cognitive development would be very limited. He would never be able to take care of himself. But all of this was secondary when they were told he would not live more than a year, maybe two. That was twenty-four years ago. While much of what the doctors said is still true, Chris has always been very much alive.
My parents did everything possible to ensure Chris was treated equally, if not more favorably, than their other children. As a child, I remember learning from my parents that nothing was wrong with Chris – he was just different. Everyone, I learned, was different and this was to be appreciated. I think this a challenging concept to teach children through example and I am still in awe that my parents were able to pull it off. Their sacrifice, looking back, was huge. It is something I respect dearly. They were promoting a culture within our home that valued my brother for who he was.
***
I did not realize how different Chris was until I was old enough to comprehend how different he was to other people. To others, something was “wrong” with him. People would ask my parents, “What is wrong with him?” It was an honest question and usually came from the right place, but it stemmed from a culture that was totally unprepared to engage with those who are disabled.
From that point on, it was a struggle to balance how other people saw Chris and how I was taught to see Chris. It was hard to balance the culture of judgment and marginalization and one of appreciation and inclusion.
***
Growing up, I was most aware of how Chris was perceived at the different churches we attended. Chris does not feel particularly compelled to remain silent during public worship services: he yells and or cheers during church at inappropriate times. With his social intelligence being that of a very young child, he has no idea that anyone would take issue with this. While a sermon on humankind’s depravity could be hilarious to Chris, a baptism might be reason for cries of deep sorrow. Frozen chosen? Not my brother.
At each congregation we worshiped at as a family, there was conversation around if Chris should be allowed to remain in the service. With each new congregation, the community had to decide if they wanted to work to form a culture of inclusion for Chris. Many people throughout the years lovingly adored Chris and wanted him to be part of the community. He always made special friends with older ladies who would sit and talk to him and listen to him laugh. Frequently, there were people within these congregations that would help my parents out with Chris during services. This, however, was not always the case.
There were others who looked at my brother and saw an uncontrolled distraction. As Chris approached his later teen years and continued to make noise during services, the feeling grew stronger that he should be removed from public worship just as a crying baby might. Occasionally, when Chris was especially vocal, people would take my brother outside. It was hard, many claimed, to understand the complexity of the gospel with Chris making noise. I’d like to say that I always had a problem with this, but I didn’t. If anything, I was indifferent. I too, sometimes, wished Chris could just be a little quieter.
***
Years past and one crisp fall day my indifference changed to conviction. It was the day another brother was married, the one in-between Chris and I. We were seating in the sanctuary, waiting for the bride to walk down the aisle, and the music stopped. There our brother was, standing at the front of the church waiting, in silence. No one really knew quite what to do.
Then Chris started laughing, really, really loudly. At first, I was nervous – here we go, again. But then I realized he was putting every person in the room to ease in a way no one else could – and it seemed he knew what he was doing. Everyone in the room knew Chris, and many close family and friends joined in the laughter. I remember thinking it was perfect. The brother waiting to be married just smiled. The music started, we all stopped laughing and the wedding proceeded.
That moment was one of the most beautiful and convicting of my life: I would never question Chris’ presence in a worship service again. I had found a culture, for however brief a period of time, where Chris’ voice was appreciated in a church setting. I wondered how I could have ever reduced Chris to a distraction in worship when I should be valuing his voice as uniquely created? Did Jesus ever ask children to stop talking in his ministry? Was not Jesus most concerned with lifting up those who were marginalized and isolated from community? How could I not seek to build the same culture for my brother? These questions plagued me, but probably not as much as they should have.
***
I have come to the very deep conviction that space should be made for Chris, and those like him, in public worship and community. Not just because it is fair or the right thing to do, but because it is invaluable. There needs to be a culture of inclusion and appreciation for disability. These are questions I am continuing to ask myself: What does this look like in my own community of worship and how can I make it happen? What would it look like to value the voices of those who are disabled on State of Formation and how can I help that happen?
Chris will never be able to post on this blog, but without him – without learning how to appreciate difference – I probably wouldn’t be able to, either. I have slowly realized that even though Chris has never spoken a word to me, his presence in my life has taught me more about acceptance for others than anything else I can think of. I am scared to think of a world where people like Chris are silenced. Even though Chris cannot talk, I am deeply grateful for his voice.
Honna,
This is beautiful. I especially loved this last line… “Even though Chris cannot talk, I am deeply grateful for his voice.” So profound.
Blessings,
Karen
Honna, I appreciate your honesty and vulnerability in the post–your willingness to admit when you, too, wished for things to be different for you when Chris was around, and the part of you who knew all along it was you, not Chris, that needed to change. When I first typed your brother’s name, I inadvertently typed “Christ.” Seems right somehow, doesn’t it?
I remember once watching a pastor serve communion directly into the mouth of a woman who was twitching and convulsing, clearly unable to hold her own bread and cup. At one level I felt shame, because there was something in the image that felt grotesque–his hand touching the saliva that was foaming out of her mouth. On another level, it was just what was supposed to be–and I remember it today because of the beauty I also saw. You’ve given us a big challenge in a beautiful, personal voice–thank you for this.
Beautiful post, Honna. Thank you for sharing these deeply personal experiences with your brother. Did you know that the name “Christopher” means, “One who is sent by Christ”? Grace and Peace, Ben
Dear Honna
That was beautiful. You are a wonderful sister to all of your siblings, but especially Chris. How lucky he is to have you in his life and vice versa.
How lucky I am to have you as my beautiful niece.
Love Aunt Thelma
At risk of redundant use of the adjective, I’ll join the chorus: beautiful! Your brother lives up to his name– not only “one sent by Christ” but one “who carries Christ” to the otherly-abled/”normal” folk. My wife and I say say similar things about her older brother with Down Syndrome.
Still, even with all that saints of the heart like your brother and my brother-in-law I have to teach me, I admit to at times having fallen into a kind of “what would he be like if he were normal” kind of thinking. I’ve heard Christian parents speculate on what it might be like to meet their child in glory when the resurrected body and mind of their child will have been “fixed.” But I wonder what that kind of thinking says about one’s (my own?) conception of human dignity. In an article that got me thinking about this kind of stuff a while back Gilbert Meilander warned against those who would too quickly homogenize the hereafter (and so rue the heterogeneous here): “Could such a monochromatic heaven [where everyone’s been “fixed”] really be heavenly? All of us thirty-five years old well endowed with (identical) reasoning capacities? If each of the saints is to see God and to praise the vision of God that is uniquely his or hers, and if the joy of heaven is not only to see God but to be enriched by each other’s vision, then why should we not look through the eyes of persons who are very different indeed? Is not the praise of a five-year-old different from that of a thirty-five-year-old, and, again, from that of a seventy-five-year-old [or from that your brother Christopher]? Why should not these distinct and different visions be part of the vast friendship that is heaven?” (The Hastings Center Report 23:4)
If already this side of glory, so many have have been enriched by Christopher’s unique vision and unfettered brand of praise, what of the life of the world to come? Perhaps the biggest surprise There will come in finding it is not the likes of Christopher at all but others who are the ones in need of fixing.
Peace,
Ben
This is a beautiful reflection, indeed, Honna. And, like others, I find your last sentence to be just priceless.
My life too, has been graced by a child I had originally feared. She had down syndrome and that little child in 6 years taught me the grace of living and the grace of dying. Christ came so that we may have life and life abundant, and he sent her to make sure I did not miss that promise from Him. As a matter of fact, life was so much more fun and removed from the worldly chasing of over rated expectations, that when she died of cancer at 6, my life was empty of the chaos I had come to love. We found a way to pay forward her beauty by adopting a little fire ball from Ukraine 3 months ago. This child has DS as well and was saved into this family from her original target of life in an institution, because we had learned to love the value and beauty of these children. When unconditional love is a handicap, society has missed its mark. Good for you, that you have not missed it at all. Thanks to my brother Brad, for sending this link.
To my dear niece, Beautiful! Love, Aunt Lorrie
A very hope filled piece Honna. It certainly makes me take pause when I think about how people who have become suddenly disabled later in life because of accidents are treated in the hospital and eventually, outside of the hospital.
Honna, I am so grateful that you wrote this. I can’t remember if I’ve told you that I have a younger brother, Charles, who has Down’s syndrome. I can identify, although each experience is unique. I’d love to talk to you about Chris and Charles some time.
Moving. Your words are so eloquently used and moving (even if it’s moving my tears). This is not only a piece about awareness but advocacy. You have given a voice to someone who couldn’t otherwise be heard and understood the same way. I work every day to do just that.
Thank you for being such a great friend and a valued voice.
@everyone: First, thank you all for your thoughtful and very kind comments. I am glad Chris’ story was something you appreciated reading.
@Cathy: your story is inspiring. Thank you for sharing it and your thoughts!
@Ben Maton: You raise a good theological question, one I have considered many times. Christians, who believe in a physical after life where they will be made perfect, sometimes picture a “perfected” current state. So, as you point out, what does this sort of thinking mean for someone who is disabled? Are some bodies more perfect than others?
I once attended a congregation where the pastor believed heaven would be filled with Christians in their perfected current state and conceded people with disabilities were a result of sin. The pastor, when questioned, explained that disabled bodies were more “sinful” because they were farther away from the “perfected” state. I have deep problems and disagree with this sort of theological understanding of God, how God creates and the value on unique creation. I think I would probably agree with the article you mentioned from Gilbert Meilander, and will try to find that. Thanks for that suggestion and your thoughts!
Honna,
Thank you for sharing the love and experiences you have shared with your brother. My cousin, Roscoe who was reared by my grandparents had Down’s Syndrome. He loved church and wanted to be on the Usher Board. I loved Roscoe because he had genuine love for everyone and for me. Even though, he was an adult when I was a child, he shared all his precious items with me, marbles, feathers, pieces of cloth etc. I loved him. So, I did not understand why he could not usher in our church. As people of God, had we become judge and jury in determining who is worthy to be among us?
All Roscoe wanted was an Ushers’ badge and take people to a seat. However, it was decided that he would sit in the back and be quiet. But, Roscoe would laugh loudly and have conversations with invisible friends who were visible to him. Finally, an older usher said that she would guide him. Wow! Like God guides us, someone would guide Roscoe, what a novel idea! Roscoe would finally be accepted to participate. Did he do everything perfectly? No! But, he definitely made everyone who entered the church feel welcomed. Just like your brother, Chris, made everyone feel at ease at your other brother’s wedding, Roscoe wanted to make everyone feel at ease by saying only one word as they entered the church, “Welcome!”
Love and Peace, Honna.
Shalom. Namaste. Sama. Pax. Salaam.
This is a very touching essay. I appreciate the depth of compassion and the generosity that you provide in sharing this with us.
There is so much that is communicated beyond words; and there seems to be too little inclination to listen to these communications because of the absence of tangible results and aesthetic evidence. Yet, it is good to see that you are able to listen to the lessons that your brother regularly shares.
It is a good reminder that Truth, Love, and God exist beyond words.
Love and Peace,
Peter