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    How My Son’s Experience with Disability is Teaching Me the True Meaning of Inclusion

    A reflection on the nature of belonging. December 13, 2021 by Captain Joyce Downer
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    Theo is the youngest son of Cpts Joshua and Joyce Downer
    Theo is the youngest son of Cpts Joshua and Joyce Downer

    I was drawn to The Salvation Army as a young adult by a desire to belong, to be a part of something meaningful. I witnessed corps members worshipping together on Sunday morning, connecting for a meal together during the week, and consistently serving the community side by side. I saw faith lived out in action, and found a space where I could meaningfully connect, where I could belong.

    Perhaps, more specifically, the appeal for me was seeing the church sign, which read “Everyone is welcome,” lived out practically and purposefully. I saw individuals whom I knew had not felt welcome in other spaces find a place of belonging in the small corps where I also found a space to belong.

    Today, many years later and thousands of kilometres from that place, I feel gently but steadily convicted by the Holy Spirit of my personal responsibility to ensure all are welcome in the places where I live, serve, minister and soldier within The Salvation Army. I am compelled by my own desire to belong, to be seen and understood, to contribute meaningfully, to be loved in my imperfection. The Lord has also reminded me in countless ways that the desire to belong is not unique to me, but is found in all of humanity.

    However, it is as I watch my youngest son, Theo, who is growing up with disabilities and complex medical needs, that I feel most deeply the desire to do more than I have been doing. I want him to be welcome in all spaces, along with any disabled person. The World Health Organization states that approximately 15 percent of the global population lives with some form of disability. That is more than one billion people worldwide, and that number is growing.

    Loved by God

    Theo’s full name, Theophilus, means “loved by God.” God doesn’t see Theo’s differences or disabilities as a mistake; he sees a person who has inherent value, his perfect creation, and has an indescribable love for him.

    Through Theo’s presence in my life—compelling me to know more, listen better and do more—I have been reminded that God’s love extends to the billion other “Theos” in the world. My love for my son has opened my eyes to all those who also deserve, but do not receive, the same access to education, work opportunities and adequate health care as those who are not disabled. And that is not OK.

    To know Theo is to love him. Theo is an engaging, sociable three-year-old. He is a strong communicator, who leaves little question as to what he wants from you, even if he doesn’t use verbal words. When Theo looks at you, you feel truly seen, as if he can see right into your soul. And when he smiles at you, you feel loved.

    Through my ministry opportunities pre-COVID, Theo got to meet a lot of people. And when he became very sick with a respiratory virus as an infant and faced an extended hospital stay, Theo’s fan base and prayer support grew. We have been blessed by the depth of love and care offered to him, recognizing that that is not the reality for all people. That being the case, I want to invite you to see Theo and every other person with disability in the fullness of who they are, not despite their conditions, not because of them, but for who the Creator has made them to be as part of God’s kingdom.

    Ensuring Equal Access

    Theo’s diagnoses are not specific enough to know the extent of his disability or the permanency of his conditions. Due to the backlog in the medical system, we have been told it could be years before we can access the genetic testing and specialists to further explore a diagnosis. 

    Most days, that is not a question that we concern ourselves with. A name or condition will not change much about the current treatment or therapy supports Theo receives, and we are learning to live in this grey area. More importantly, I am learning that Theo does not need to be “fixed.” The end goal is not him being “better.” Ensuring Theo has the same access to things that others have is the real issue that needs fixing. 

    The Downer family pose together on a snowy winter day
    The Downer family: from left, Theo, Cpt Joyce, Joel, Cpt Joshua, Trinity and Zoe

    I feel frustration as I continue to discover spaces and programs where he is not necessarily welcome. Of course, no one says he isn’t welcome, but these places are inaccessible to him or not without barriers to access.

    The process of finding a safe, loving, learning childcare environment for Theo outside our home has been the most tangible example of inaccessibility we have experienced as a result of his disabilities. It has been slow, time-consuming, unclear and complicated, with no promise of a positive outcome. It seems countless families of children with disabilities experience the same thing. In a conversation with a consultant recently, I was informed that more than 100 families in our community go without access to childcare annually.

    I anticipate rejection with every phone call made in our daycare search, unable to hide my overflowing emotion as I am asked to share about my son. As I disclose the specific type of support he needs, it feels vulnerable and also dishonouring to my son, because I don’t want to limit his existence to his medical needs. Though I recognize it’s necessary and essential to share this information for his safe care, Theo’s disability does not define him.

    I also feel anger that in a developed society, we are still living in a time when not everyone sees the inherent value and worth of those with physical or mental disabilities. Because Theo is three, he still has the sweet toddler factor and the safety of us as his parents always being nearby to advocate on his behalf, to protect him and keep him safe. I have the privilege to work flexibly, so I can attend essential appointments and invest countless hours working through processes, learning how to navigate systems and advocate for him. But I am acutely aware that not everyone has that privilege.

    As I walk this road with Theo, I also must continue to figure out how I can do better—better in my home, my ministry and my church. I cringe as I recall using the word “inclusive” about programming that I was part of, without doing the hard work to ensure that inclusion was a reality for all people (spoiler alert: it wasn’t). God forgive me.

    Beautiful Diversity

    There is much tension as I journey with Theo and learn more about what it is like for people who are disabled. I am not ashamed of my son or his disability; I am wildly proud of who he is. But as I do more work personally, I recognize his story and the specifics of Theo’s medical history are personal and not for public consumption. What I do feel compelled to share is my learned experience, and that I see opportunity to make sure that our corps and our community programs do not exclude those whose needs are different than our own.

    Our churches should represent the beautiful diversity of God’s kingdom, because I know how much richer and more joy-filled my world is with Theo in it. I know all who have encountered him would say the same. My challenge to you is to ask yourself the following question: What do you need to do differently to ensure that Theo, and every other person “loved by God,” belongs in your corps and community programs?

    Captain Joyce Downer is the divisional children and youth secretary in the British Columbia Division.

    Further Reading

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    Comment

    On Friday, December 17, 2021, Sharon Avery said:

    Thanks Joyce! So well said. May God continue to give you the wisdom, strength and, most of all, the love to carry on as God leads you. I pray that for me too.

    On Thursday, December 16, 2021, Sharon Chynn Anstey said:

    The tears are falling & the memories are running through my mind! My brother Chrissy had CP and being the older sibling I was his voice after my parents could not be! We hope that things have changed that accessibility is a right, inclusion a right but I guess it hasn't! Joyce your words & your journey touched my heart! Big hugs for Theo & his family! You guys were chosen for "Heaven's very special child"!

    On Tuesday, December 14, 2021, Paul Rideout said:

    Joyce, thank you so much for sharing your journey that gives insight but also holds a mirror for us to assess our current comfortable practices to see how we can do better. God bless you Theo and all other Theo’s - we love you and God help us to offer them our very best.

    On Monday, December 13, 2021, Kristen Gray said:

    So beautifully spoken Joyce. As someone who shared a similar journey 20 years before you I wish I could say that much progress has been made in those 20 years. But sadly as I read of your struggles to find appropriate supports I see much of my own journey with a son with a disability mirrored in your story all these years later. I can only pray that the pace of much needed progress will increase as time moves forward for the next generation.

    On Monday, December 13, 2021, Major Colleen Winter said:

    Beautifully written Joyce! You and Josh are blessed with a lovely family. Yes little Theo, truly "loved by God' May the Lord continue to encourage you, and minister to you, as he also ministers through you to help others!

    On Monday, December 13, 2021, Natalia DeBoer DeBoer said:

    I love it! Thank you.

    On Monday, December 13, 2021, Mary Downer said:

    It’s amazing how much Theo has taught us,Joyce your words are so inspiring and I know you and Joshua have enough faith and prayers for you and your family.I love you 😘

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