When we imagine that some people endure “special” kinds of suffering, we alienate one another. We leave people isolated when what we actually need is each other.
I wanted to explore something Mary shared in the last episode, about this lie that the lives of the disabled are “impossibly hard.” What is it like for families coping with disabilities? What are the solutions we offer them now? Is erasing the disability something they even want, or are they asking for something else?
Guests appearing in the episode:
Dr. Erica Salter
Erica K. Salter, PhD is an Associate Professor of Health Care Ethics and Pediatrics and the director of the PhD program in Health Care Ethics at Saint Louis University and the vice chair of the Ethics Committee at Cardinal Glennon Children's Hospital. Her research uncovers and examines the assumptions underlying current dominant concepts in clinical ethics, especially pediatric clinical ethics and clinical ethics consultation with the aim of improving health care decision-making for patients, families and providers. She lives in St. Louis, MO with her husband, Jake, and two kids, Jonah (6) and Leo (3).
Transcript
A little girl named Margaret was born to a wealthy family in medieval Italy and spent much of her childhood in hiding. The outside world believed a lie that she had died at birth. The truth Margaret had been born blind and disabled. She had spine and leg abnormalities severe enough that her parents preferred to hide her away than to admit that she was their child. The only person outside of the household allowed to visit Margaret was their parish priest. When she was a teenager, Margaret's parents took her to a nearby shrine hoping for a miraculous cure, something that would fix her blindness. Her misshapen features, the limp in her walk. When that wasn't the miracle they received, they abandoned her there. Alone in a strange city. She learned to fend for herself. She begged. It was here in Costello where Margaret met a group of lay Dominicans, men and women who had committed themselves to following the example of Christian life as led by Saint Dominic. They invited her into their way of life into his spirituality. Finally, in a place of home, no longer hidden away, Margaret took an active role in her new city. She became known for her cheerfulness, beloved by the poor of the city, who offered her a home when they could. She taught their children she cared for the sick. She visited the imprison and comforted those who were suffering. When she died at the age of 33. The entire city attended her funeral today Blessed Margaret of Costello, is the patroness of the blind and of disabled children. Blessed Margaret's story is not as removed from the reality we experience today as you might think. How many children are rejected by their parents because of genetic abnormalities before they're even born? Margaret's parents had access to prenatal testing, the joy and kindness that transformed an entire city would never have existed. But certainly Margaret's life had challenges. But what I'm coming to realize throughout this season and all my interviews, is that all of our lives have challenges. We all have crosses to bear. Our society is built around avoiding suffering even in convenience as much as possible. We don't want to face our own suffering, let alone that of other people. But that response is based in. Here. When we create in our own minds these special kinds of suffering, we alienate one another. We leave people isolated when what we actually need is connection. I wanted to explore something. Mary saw one of our guests had shared. In episode 4 she spoke about this lie that the lives of the disabled are impossibly hard. What is it like for families coping with disabilities? What are the solutions we offer them now? Is erasing disability something they even want, or are they asking us for something else? I'm Samantha Stephenson and this is brave new US.
The message that we might be communicating is that we wouldn't want them around if we could have prevented them, we would. Have.
We don't talk about a pencil and say, well, it's inherently good or it's inherently evil.
We all are given this gift of suffering. This moment where God is asking us to walk closer with him, to cling to the cross.
It's pain and it's suffering.
And none of us get out of it. We're at a point where we're trying to get to a perfect generation.
That puts an insane amount of pressure on people to earn or deserve their place.
We are dealing with not simply shaping a life, but actually shaping the person.
We have the power to change our genetics. But should we? And how might using this power change who? We really are. This is bioethics in the light of faith. Welcome to Season 1 with Brave new US.
But there are a lot of things about Down syndrome the way it. Manifests. In certain traits and characteristics that I don't think really need treatment or fixing.
This is doctor Erika Salter. She's a professor of clinical ethics at Saint Louis University, which means she studies how doctors and patients interact in the medical setting. In particular, she observes, children with disabilities and their families. We talked about the way our society sees people with disabilities. And how that affects not only their treatments, but the ways we choose to relate to them.
To look at them as a diagnosis that needs fixing, I do think it's problematic and it and it causes us, I think, not to see the whole person. So Down syndrome, I mean, usually it's a multidisciplinary approach to a diagnosis like Down syndrome and a lot of the therapies. And education are focused not only on the individual and the patient, but also on the family, on the parents and how to interact and sort of integrate their child with the rest of their family, kind of schooling to pursue for someone with Down syndrome is an important question as well, inclusive education so combining. Individuals with disability diagnosis or intellectual disabilities or developmental disabilities with. What you might call sort of neurotypical kids, so kids that are developing more along than normal continuum show good outcomes, meaning good outcomes not only for the patient with these diagnosis, but also for other kids that what we're seeing is the benefits are not just to the to the child with the diagnosis, the benefits are to the whole community. When we include them, what we see is new experiences of difference and empathy and inclusion that I think are really enriching for for everyone.
As we talk, I think about this idea of categorizing impossible types of suffering, of how we seem to want to separate ourselves from people who experience. I'm starting to think that it really is an illusion and worse, it's one that keeps us from recognizing the real gift of people with these conditions. When we don't want to face the suffering, we miss all the beauty that comes with it.
I won't say that necessarily. The experience is wonderful all the time, but we do see specific I think GIFTINGS and if we think about it in terms of the imago day or the image of God like ways in which these individuals. May be special. We reflect God's image right ways that you don't see very typically in the population. Autism often has comes with what you would call, I think, a splinter skill, meaning these really interesting skill sets, like a really distinctive ability for memorizing trivia for example. So an ability to memorize here is. Even outperforms neurotypical or typical neurodevelopment developing kids or adults, and that's, I think, something really to to appreciate and to behold in a in an appreciation. The same thing with Down syndrome, you know, not necessarily with splinter skills like that, but I think it's been noted pretty regularly that individuals with Down syndrome are markedly more joyful and happier on the whole than neurotypical peers. I think that's a really beautiful thing to appreciate in these populations. Especially as members of a Christian community where we are called to acknowledge the image of God and in all humans, to appreciate the dignity that's been created in. In them, I think disability challenges us in new ways to even further expand our imagination of what that image might look like in an image bearer.
So maybe a genetic solution to something like Down syndrome isn't really a solution at all. I keep hearing Down syndrome doesn't need fixing. Clearly something needs fixing. Where babies with Down syndrome wouldn't be aborted at the rate that they are and people wouldn't be rebranding infanticide to present it as a palatable. Solution. What are they trying to fix?
We want solutions. I think as humans we desire simple causation. It's really it's tidy and understandable for us to say X causes Y. And what that allows us to do is then look at X and say, OK, how do we fix X if we don't like Y? Then let's look at how we can fix it. So a genetic, A genetic component would perhaps open up new forms of therapy or even new forms of preventing these sorts of diagnosis, which is very alluring, I think, in medicine. A new endeavor to really seek these therapies out.
But.
I do worry though, that it focuses our attention on the wrong things, right? So again, if we are hoping to control something like a genetic diagnosis or an individual with a disability, I worry that our attention is more on the deficit and not on the gifting. And I worry that we sort of miss the point. Of of how God created these people, not to say, necessarily, that God intends suffering or limits. It's hard to know how disability fits like to know perfectly how disability fits into God's Kingdom. But I do think that as a community of Christians, we should embrace differences wholeheartedly and unconditionally.
The more I listen to people in these communities, the harder time I have believing that the genetics are the problem. The disabilities, even with all their challenges, are what need fixing. I'm starting to suspect that the real problem isn't with the them at all. Maybe the real problem is actually inside. Me.
When we focus our attention on something like a genetic cause, the the message that we might be communicating to individuals with these sorts of diagnosis or to their families is that we wouldn't want them around if we could have prevented them, we would have. And that's a really tragic message to communicate and and I think not a Christian message. I think the a better message is that we love you. And we accept. You as you are and that we will work to improve your life in the ways that we can, but we are all vulnerable, right? I mean, it's not just people with disabilities, developmental or intellectual disabilities. Or physical disabilities that need healing. We all need healing. We are all so disabilities, I think invite us to see in all of humanity a vulnerability, A vulnerability, and a dependence. A need for someone or something else. And that I think the answer to that is in Christ. But when we look at someone else and say this is what's wrong with you. And you need to become like me. So a neurotypical, neurotypical, developing adult. Right, think we again sort of missed the point.
Right.
Maybe the the point that God is trying to teach us through these sorts of diagnosis, which is. Diversity is valuable and in community we can think better appreciate that when we don't, don't seek to eliminate diversity, but instead embrace embrace. It.
All this makes me wonder. If trying to fix disabilities isn't really about empathy at all, at least not entirely. It seems to me that part of our uncomfortability around people who can't do everything for themselves, who are inherently. Is it? It forces us to face that we aren't actually as capable as we'd like to think we are. We like pretending to be flawless and people living with disabilities. They blow that worldview out of the water. Still, this impulse to help someone who seems somehow in need, that's built into who we are. That's the response to vulnerability that drives connection and community. Our desire to help those in need, that's what makes us human. So what is a compassionate response to disability? How can we help?
Primarily what I would want to do is ask the person with the diagnosis, you know, how does it feel to live with this? What are the hard parts? You know, it might do us well and it might do them well to look for ways to treat or cure those sorts of things. So there's two different well, there's more than two, but there's at least two different models of disability, the traditional model, the way that most people think of disability in the way that. Medicine has thought of disability historically, is it's called the medical model. Well, essentially the medical model looks at an individual with a disability and says what's wrong here is you. So you specifically the individual patient have specific deficits that need fixing. If there's a problem with the situation, it lies in the patient and you know it's you can see, I think fairly clearly. How that would be applied to individuals with disabilities right? Like so someone who is deaf say, well, you need to hear the problem here is that you cannot hear. A social model, on the other hand. So that's sort of a a new model that's being developed by disability serious and disability studies and disability theologians are looking at society and saying maybe the problem is not primarily with the individual. Maybe the problem is with cultural ideas about disability. Or structural features of the environment in which people with disabilities live. So a person in a wheelchair is not necessarily a problem. One, unless you don't have good ramp access right for wheelchair ramps. A person that is deaf is not a problem unless you don't have people that speak sign language or can read lips. So a social model looks more looks more to the sort of social and cultural constructs surrounding the individual and says you know what? There might be some things inherent in an individual with the disability that even that person would say they'd like to be fixed. OK, that's something that maybe medicine can really. Look at. But broadly speaking, that's not all there is, and much of what we might understand is the identity of an of. An individual with a. With a disability does not need fixing as long as we are a more hospitable community. As long as society can sort of accommodate differences in a in a more holistic and inviting way, those individuals. Don't need to be a problem? Disability deafness. A wheelchair doesn't need to be a problem. So I would say cystic fibrosis is an example. Probably more on the medical side of things, meaning there probably are a good number of.
Of.
Symptoms or experiences of someones that the individual him or herself would say? Listen, I'm in pain a lot or I can't breathe right like I my lungs don't work well. Those might be things that medicine really can attune, can be attuned to, and maybe there are some treatments to fix there, but there might also be some experiences of someone with cystic fibrosis that. Are more expansive that invite them into new ways of experiencing the world, and we can't know that unless we talk to those individuals. I think hearing the voice that directly from the patient or the family themselves is perhaps one of the best ways of learning how we can better serve those individuals both. As a society. He, as a medical community and as a church community.
Is there any role for genetic editing as a solution to disabilities?
It's certainly not unwise to think about the genetic components of these sorts of diagnoses, but if that's the only place we're putting our attention, I do think that we are underserving these populations, right? We're we're underserving the people that exist before us right now, the genetic solutions will probably not come to be for those. For the the people in our communities right now in the present. And I don't think that they will solve all the problems of the future either. I think that that's sort of a farce to believe that, you know, finding the genetic component will then offer us the the magic pill or the magic solution, if we even conceptualize these diagnosis as things that need to be solved.
It isn't the best use of our resources and in many cases it actually can create more problems.
If there are new solutions to or new treatments or cures, for example, to these diagnosis. What we see happen is it is well resourced, wealthy families that are able to afford or have access to these sorts of therapies or cures that necessarily causes gaps and risks in in access and equality, so we see. Certain populations unable to access those and then that further stigmatizes the families or communities that either have chosen or have no other option than to continue existing with that diagnosis or. For, you know, continuing with the pregnancy without a therapy, like a a gene therapy solution to the diagnosis. So I think it causes it can solve some problems for some people, but it causes new problems for society and it causes. And I think it exacerbates old problems in terms of how we examine social equality. Around issues of disability.
If all that is true, then what is the better use of our resources?
The best use of our resources is improving community education, improving access, improving sort of the structural components of community societies, churches. Us in to better accommodate various needs, right? So I mean, I think things like Americans with Disabilities Act, the ADA Act invited us to start including things like wheelchair ramps and accessibility for those with that are blind or deaf. These are important improvements we can make. To culture and to society that don't necessarily say, look at the individual and say there's something wrong with you. I also think that our, I would say our resources are better spent sort of in a more socially or culturally minded way. I also think that we need to support the families that support these individuals better, right? So we need to look at the support system of these patients when these patients are children. Does the family have what they need to care well for their child? They have access to things like speech. Therapy or language therapy, or occupational therapy? Do they have communities in which they can feel included? Do they? Are they connected to other families with similar diagnosis and similar experiences? Do we invite them into our worship services? Do we say that they are welcome and included when they are there? I think that some of those solutions might sound naive or simple, but I do think that in terms of impact they can be very powerful.
It seems like with all the advances of modern technology, there should be some sort of shortcut, some way to bypass the need for society to shift its attitudes and practices. Then again, what I'm learning is that this impulse to fix the disabled actually stems from a place inside myself that wants to see them as the problem and doesn't want to acknowledge that my attitudes and ways of encountering the world might be the real problem. As complicated as medicine is. Solving a medical problem is much more straightforward than solving the deep aching inside of all our souls.
Drawing on concepts or assumptions that we make about what constitutes suffering or what constitutes quality of life, I think it's dangerous, right? So I will talk a little bit about what's called the disability paradox. First, this is essentially the idea that people without disabilities looking in so looking as a second hand observer onto a life of someone with a disability. We from the outside, judge their lives to be less enjoyable or worthwhile than they judge their own lives to be. Meaning from the outside we have a tendency to underestimate how much people with disabilities enjoy or find satisfaction in their. And that's a dangerous assumption, because that means I think we're sort of over medicalizing or pathologizing aspects of their diagnosis that are not problematic, right? If they are, if they're able to adjust. So if we look at someone with if from the outside, we look at someone with, say, Down syndrome and say, gosh, look at all these deficits that. That they have. They typically don't have an IQ of any higher than 50. That basically means that they live at kind of the intellectual abilities of about an 8 or 9 year old for most of their. Life from the outside, someone who has a higher IQ than that, who like myself as an academic, someone who values my intellectual life very highly. I value argumentation, I value reading, I value dialogue and discussion and research and contribution. I might look at an individual with an IQ of 50 and say that must be such an impoverish. Life right to not be able to read law articles or debate with your friends about ethics issues, for example. But that's, I think, an assumption that's being made from a very specific perspective. My perspective, my experience, and it neglects the fact that this other individual with say Down syndrome. Or low IQ has a different experience. They value probably other things they are able to find enjoyment and pleasure in other things, and just because their life or their intellectual abilities look different than mine does not mean that they can't have a very similar quality of life to me, or maybe even again in the case of individuals with Down syndrome, maybe even. A better quality of. Life, right. There's sort of a happiness and satisfaction. To not always seeing what's wrong with your arguments or not always seeing the next new thing that you need to read or the next new argument that you need to make. So again, it's. I mean, it's very I think individual and it's very new. Once, but the blanket assumption that someone with these diagnosis necessarily has a lower quality of life is a dangerous one to make, because a it's not true when we do surveys with these individuals. And with that, have these diagnosis, we learn that they actually usually have much higher qualities of life than we expect them to. By the way, they're physicians regularly. Under rate their quality of life as well, meaning the medical providers that they rely on. Expects them to have less satisfaction with their life than they actually do, and I think that that's something that we should remember as we look in from the outside. And I think again, it's very tempting to look at someone with certain deficits that we have not experienced and say, gosh, that must be a life full of suffering. So looking at someone. In a wheelchair, for example, and saying, gosh, I can't imagine not being able to walk around my neighborhood or climb up on the playground with my kids every day, I look at their life and say, gosh, they must be suffering. Again, what that does is it a it might be a real, genuine kind of effort to empathize, which I think should be acknowledged, that usually people do not come from places of male intention in these sorts of judgments. They really do try to apply empathy to situations. But what it does not acknowledge is that. Their their experience is different. They might actually say, gosh, it's so freeing to be able to wheel through the park instead of walking, right? It's it feels closer to flying when I'm in my wheelchair again, I don't want to oversimplify experiences. There are probably many limits and challenges to for individuals living with. Qualities, but I think we the point is that we can't assume what those challenges are, right? We can't assume that X is causing suffering or that Y is a low quality of life. We need to ask. We need to listen in the areas in which there is true suffering. What is our response? Well, it might be searching for therapy or treatment. It might be searching for a new cure. Sometimes that's not possible, and I think more often the answer is companionship. It's presence. It's being with the person in their moments of suffering. And holding their hand and saying I'm with you and I love you instead of saying, hold on, I'll come. I'll fix it. Let me go get a solution or a tool and I'll come back and I'll fix it. We wish we could do that. We wish we could, you know, go escape into science or methods and come out with the perfect solution to the problem. But I'm afraid that that will never be the case. I think that's just the human condition. And more are are calling is instead more to be to be present with the individuals that are experiencing, you know, maybe they are experiencing low quality of life or they're suffering or they're depressed or they're in distress. These are emotions that we all experience. It's not. These are not just emotions of certain diagnosis. These are these are all human emotions. This is what it means to be human and as a member of the Christian community, I think what calls God calls us to more than anything is is presence and relationship and communion. More than fixing.
That's it. That is what we are all so afraid of. We don't want to sit with someone in their suffering. We want to avoid pain. We want to pop a pill. We have allowed fear to rule us for so long that we don't even remember what resilience looks like. I don't think the problem is trying to address suffering. We have all kinds of wonderful tools at our disposal. Medicine is a real gift.
Some populations or individuals would say this is a part of my identity and I wish like there's nothing to fix here and others would say heck yes, please help. Like this is I I don't like living with this. I wish that there was a solution to this problem. So I you know, I'm optimistic about the like CRISPR types of gene editing. For those like sort of viruses or illnesses or diseases that are. Almost uniformly experienced as bad or experienced as one that can cause suffering. Again, though I caution against the idea that we can just sort of genetically enhance our way to be a perfect human. Right, that there's some sort of ideal human that we're aiming at and that if we can just have enough genetic modifications, enough medicines, enough therapies, that will all be sort of these perfect exemplar humans. I think we have an example of why the perfect example of why that a that's not possible and B that maybe not even be desirable and that's in Jesus. I mean Jesus was, you know, as the son of God the perfect human. But he put on flesh and became a vulnerable human being. Embodied in this earth just the way that we are experiencing hunger and thirst and suffering. And I think that what that points us to is a is an ideal that is not this transhumanist ideal. It's a more compassionate.
That's.
Inclusive accepting version of who we already are. Right, humans in community and in a community that includes differences.
If Jesus is the perfect human and it's his compassion that we want to emulate, then it seems like the disabled who bring out compassion within us more deeply actually invite us to become more like Jesus. That's if we're trying as a society to become more perfect by his standards. Then it seems like what we actually need to do is not eliminate disability, but to me in community with these people, and to allow ourselves to be transformed by that communion in our pluralistic world. In a society where we try to be open to dialogue and respectful of all kinds of beliefs and opinions, we gain tolerance and freedom of discourse. But I think one of the things we've lost is our confidence that every life matters. When we have to check our beliefs about God at the door, it's harder to argue that every human has value. We have to prove it, and without God, the only way to prove it is to offer some kind of instrumental value. And so we need each other. We need the vulnerable to remind us of what, really. And we need to be the voices standing up in defense of the vulnerable. What happens when a life appears to hold no value appears to be filled just with suffering. What about people who can't contribute and don't seem to have any kind of real meaningful relationships?
No, no.
What is it that makes a life valuable?
And I will be you well.
That's next time on brave new US.
All will be well and all will be well and all will be well.
Brightness is written and produced by meet Samantha Stephenson. Special thanks to Lauren Klingen, Mackenzie Kim's original music all will be well by Jessica Gearhart. You can find jessica@jessicagearhart.com, as always, the full interval.
You know.
Are available on our Patreon. That's patreon.com/brave new US under Patreon. You get access to the full interviews, recommended reading, and a forum where I personally answer. Your question. God bless and thank you for listening.
Well, be well, well, and I will be well and I will be well. Will be well will be well. Will be well. We will, we will, we will. We will, we will be will we will will be will be will. Be well, will be well. Will be well, will be will be, will be, will be will be well. Only when I will be well and I will be well will be well, we will be well. All will be well and I will be well and all will be well. Will be well and I will be well. Will be well. Will be well and I will be well and I will be well. All will be well and I will be well and all will be well.