Amy Julia. Thank you for this podcast. I come from a different perspective in that, two years ago my 66 year old ID brother came to live with us. He was born without his corpus collosum. I know people don’t like others linking their essays to people’s comments but my story brings a whole different perspective to this conversation. When parents of disabled children die, the siblings are left to care for them. My husband and I have three boys scattered across the country, we have one grandchild with hopefully others on the way. The family dynamics of taking this on as a sibling are entirely different. We need communities like us to help navigate this time of our life. It’s too much to write on a comment but I would invite you to read my essays I wrote on this dynamic. I see so many communities for families of children but those of us with older disabled siblings also need communities. It’s a whole different ballgame.
Janet, thanks so much for sharing here, and I did read your post (and I also remember your email from last summer). I heard from another adult sibling in a similar situation just a few weeks ago, and I would imagine there are more and more people in your situation as people with various disabilities outlive their parents. Do you know of any online (or in-person) support networks?
I do not know of any online support groups. The difficult thing is we as siblings struggle with the love we have for our disabled siblings but our spouses also take on a responsibility. That brings a whole different perspective. I am so thankful for the local community I have been able to engage with through my brothers day program and have met a person in our situation.
The inclusion conversation is challenging. My brother spent all his adult life just with family. He never had outside friends or groups like him to be a part of. Most adults are very kind and mostly welcoming but it is like you discussed in the podcast- they really just don’t know what to do with disabled people. My brother can carry on conversations but sometimes he just makes things up that don’t make sense. Some people do not know what to do with that. Now that he is in a day program with other disabled people, he is thriving. He has his own friends for the first time in his life. While he still has mood swings that are difficult, overall he is happier with people like him. That’s why I find the inclusion conversation so complicated. I believe that inclusion should happen but I also see how much happier my brother is when he is with others like him.
Sorry for long response. I’m continually reaching out to others looking for support and I am grateful for the progress we have made. So if any other siblings reach out to you please send them my way. I may not have answers but I can be a friend who understands the difficulty.
I agree with the tension you feel as far as where your brother, and for us, Penny, "fits." I theoretically want her to be integrated into any space she wants to be a part of--I think it's theoretically great for everyone. And yet I also don't want to deny her, or her friends with IDD, the goodness and sense of relief and being able to truly be themselves when they are together. My friend Heather Avis calls it a "shoulders-down" space, where you don't have to be on alert, and those seem important. I also think about disability as a sort of cultural identity that allows us to connect with other people who share that identity.
Also, I will try to track down the other sibling who reached out to me recently and put you two in touch... stay tuned.
Janet, I do have the information of the other adult sibling. Can you email me at amyjuliabeckerwriter@gmail.com? I can put you in touch with each other
Hi Amy Julia. I appreciate your thoughts and wrestlings around disability. Leading a global disability ministry for the past 16 years, I’m not sure I can agree with your conclusions in this article, however. While I can definitely agree with you for some situations, including your own, I don’t think they are universally true. I find the conversations around disability are so vastly different in the West vs. the Global South. Of course, some of that has to do with the wholistic nature of disability, and how many other factors impact a person’s experience with disability (socio-economic resources available, social services available, type of disability, societal attitudes, etc). But I would say that for many (maybe even most?) people with disabilities around the world, disability and suffering ARE synonymous. Their disability causes immense suffering. And while they can sometimes find a way to adopt a theology and a social construct that gives them hope and acceptance, the suffering doesn’t go away.
I would also disagree on the point regarding brokenness and limitations. I think it again often comes down to the type of disability and the experience of it. While many disabilities really are just limitations and can be opportunities to find strength in weakness through Christ, and allow everyone (the person and those around them) to learn that there are many ways to do various things, for others, their limitations are indeed brokenness. On the theological question of whether disability is a result of brokenness, I know my Global South friends would almost all fall on the side of “yes - and praise God for the redemption of all things and the eventual removal of all brokenness.” Again, I realize that is not where everyone falls, but I think that also illustrates that there is not a ubiquitous answer for the questions around disability and its meaning. The longer I live and work among people with disabilities around the world, the more I am learning to hold tension on the answers that everyone wishes they had. I think some of it falls into the category of mystery for us mortals.
Kim, Thanks so much for your words here. Part of the reason I wanted to have this podcast conversation is to give voice to the people whose experience of disability is so different than our family's, both within the United States and beyond.
I do wonder whether we disagree as much as you think. When I say that brokenness and limitations are not the same thing, I don't mean that there is no brokenness associated with disability. I do mean we need to be careful to discriminate between the two. Similarly, when I say that disability and suffering are not the same, I mean a few things. One, that the experience of disability does not always involve suffering. Two, that the suffering provoked by disability sometimes comes from the body/mind of the disabled individual but it also (often) comes from the social situation in which they find themselves. I think this second point is born out in the situations you describe. And three, that with all that said, there is suffering associated with disability, and we ought to want to help and care for people in the midst of that suffering (whether it is the suffering of physical pain or emotional alienation or social stigma).
I also agree that much of it falls into the category of mystery, and even trying to put categories on it demonstrates our tendencies to want to completely understand and define the human experience when we are often simply invited to love one another without categories and without full understanding.
Thanks again for your thoughtful response here. Amy Julia
Yes to all of that. It is a very nuanced conversation, and I love how you lean into all of that. Would love to join you on your podcast sometime and we could discuss the global experience. And, if you’re interested, I could either bring along, or connect you with some others from the Global South who have thought deeply on this.
Have you read the book “The Girl with the Special Shoes” by Hilda Bih Muluh? Excellent memoir of God’s grace in a really challenging situation of progressive disability from a woman in West Africa (currently living in the US). Highly recommend. She is a friend and articulated many of the tensions so well.
I have not read The Girl with the Special Shoes. I will look it up! I'm done recording podcast episodes for this season, but I will make a note to circle back to you in the future on this idea. Thank you!
Here’s the link
https://open.substack.com/pub/janet769/p/special-needs-children-grow-up-into?r=1lyvxc&utm_medium=ios
Amy Julia. Thank you for this podcast. I come from a different perspective in that, two years ago my 66 year old ID brother came to live with us. He was born without his corpus collosum. I know people don’t like others linking their essays to people’s comments but my story brings a whole different perspective to this conversation. When parents of disabled children die, the siblings are left to care for them. My husband and I have three boys scattered across the country, we have one grandchild with hopefully others on the way. The family dynamics of taking this on as a sibling are entirely different. We need communities like us to help navigate this time of our life. It’s too much to write on a comment but I would invite you to read my essays I wrote on this dynamic. I see so many communities for families of children but those of us with older disabled siblings also need communities. It’s a whole different ballgame.
Janet, thanks so much for sharing here, and I did read your post (and I also remember your email from last summer). I heard from another adult sibling in a similar situation just a few weeks ago, and I would imagine there are more and more people in your situation as people with various disabilities outlive their parents. Do you know of any online (or in-person) support networks?
I do not know of any online support groups. The difficult thing is we as siblings struggle with the love we have for our disabled siblings but our spouses also take on a responsibility. That brings a whole different perspective. I am so thankful for the local community I have been able to engage with through my brothers day program and have met a person in our situation.
The inclusion conversation is challenging. My brother spent all his adult life just with family. He never had outside friends or groups like him to be a part of. Most adults are very kind and mostly welcoming but it is like you discussed in the podcast- they really just don’t know what to do with disabled people. My brother can carry on conversations but sometimes he just makes things up that don’t make sense. Some people do not know what to do with that. Now that he is in a day program with other disabled people, he is thriving. He has his own friends for the first time in his life. While he still has mood swings that are difficult, overall he is happier with people like him. That’s why I find the inclusion conversation so complicated. I believe that inclusion should happen but I also see how much happier my brother is when he is with others like him.
Sorry for long response. I’m continually reaching out to others looking for support and I am grateful for the progress we have made. So if any other siblings reach out to you please send them my way. I may not have answers but I can be a friend who understands the difficulty.
I appreciate your response and the work you do
I agree with the tension you feel as far as where your brother, and for us, Penny, "fits." I theoretically want her to be integrated into any space she wants to be a part of--I think it's theoretically great for everyone. And yet I also don't want to deny her, or her friends with IDD, the goodness and sense of relief and being able to truly be themselves when they are together. My friend Heather Avis calls it a "shoulders-down" space, where you don't have to be on alert, and those seem important. I also think about disability as a sort of cultural identity that allows us to connect with other people who share that identity.
Also, I will try to track down the other sibling who reached out to me recently and put you two in touch... stay tuned.
Janet, I do have the information of the other adult sibling. Can you email me at amyjuliabeckerwriter@gmail.com? I can put you in touch with each other
Hi Amy Julia. I appreciate your thoughts and wrestlings around disability. Leading a global disability ministry for the past 16 years, I’m not sure I can agree with your conclusions in this article, however. While I can definitely agree with you for some situations, including your own, I don’t think they are universally true. I find the conversations around disability are so vastly different in the West vs. the Global South. Of course, some of that has to do with the wholistic nature of disability, and how many other factors impact a person’s experience with disability (socio-economic resources available, social services available, type of disability, societal attitudes, etc). But I would say that for many (maybe even most?) people with disabilities around the world, disability and suffering ARE synonymous. Their disability causes immense suffering. And while they can sometimes find a way to adopt a theology and a social construct that gives them hope and acceptance, the suffering doesn’t go away.
I would also disagree on the point regarding brokenness and limitations. I think it again often comes down to the type of disability and the experience of it. While many disabilities really are just limitations and can be opportunities to find strength in weakness through Christ, and allow everyone (the person and those around them) to learn that there are many ways to do various things, for others, their limitations are indeed brokenness. On the theological question of whether disability is a result of brokenness, I know my Global South friends would almost all fall on the side of “yes - and praise God for the redemption of all things and the eventual removal of all brokenness.” Again, I realize that is not where everyone falls, but I think that also illustrates that there is not a ubiquitous answer for the questions around disability and its meaning. The longer I live and work among people with disabilities around the world, the more I am learning to hold tension on the answers that everyone wishes they had. I think some of it falls into the category of mystery for us mortals.
Kim, Thanks so much for your words here. Part of the reason I wanted to have this podcast conversation is to give voice to the people whose experience of disability is so different than our family's, both within the United States and beyond.
I do wonder whether we disagree as much as you think. When I say that brokenness and limitations are not the same thing, I don't mean that there is no brokenness associated with disability. I do mean we need to be careful to discriminate between the two. Similarly, when I say that disability and suffering are not the same, I mean a few things. One, that the experience of disability does not always involve suffering. Two, that the suffering provoked by disability sometimes comes from the body/mind of the disabled individual but it also (often) comes from the social situation in which they find themselves. I think this second point is born out in the situations you describe. And three, that with all that said, there is suffering associated with disability, and we ought to want to help and care for people in the midst of that suffering (whether it is the suffering of physical pain or emotional alienation or social stigma).
I also agree that much of it falls into the category of mystery, and even trying to put categories on it demonstrates our tendencies to want to completely understand and define the human experience when we are often simply invited to love one another without categories and without full understanding.
Thanks again for your thoughtful response here. Amy Julia
Yes to all of that. It is a very nuanced conversation, and I love how you lean into all of that. Would love to join you on your podcast sometime and we could discuss the global experience. And, if you’re interested, I could either bring along, or connect you with some others from the Global South who have thought deeply on this.
Have you read the book “The Girl with the Special Shoes” by Hilda Bih Muluh? Excellent memoir of God’s grace in a really challenging situation of progressive disability from a woman in West Africa (currently living in the US). Highly recommend. She is a friend and articulated many of the tensions so well.
I have not read The Girl with the Special Shoes. I will look it up! I'm done recording podcast episodes for this season, but I will make a note to circle back to you in the future on this idea. Thank you!