A Conversation with Dr. Christina NicolaidisDr. Christina Nicolaidis is a professor at Portland State University and a general internist at Oregon Health and Science University. She is the co-founder and co-director of the Academic Autism Spectrum Partnership in Research and Education (AASPIRE). She is also the founding editor in chief of the peer-reviewed journal, Autism in Adulthood.
|
“People confuse disability with illness all the time and there's a distinction between somebody's underlying disability status and an illness that may be bringing them to the end of life.” - Dr. Nicolaidis on disability vs illness
1. Could you please talk more about how aaspire or other projects that you may be working on currently are pushing the field of autism advocacy and research?
We've been very fortunate. So AASPIRE started back in 2006. I had been doing CBPR with other communities. There wasn't any CBPR (Community Based Participatory Research) with the autistic community [at the time]... So we’ve really worked hard at kind of pushing the idea that that research is going to be more effective, more impactful, more valid..., if you're doing it in partnership with autistic individuals. The ‘Nothing about us without us’ mantra has been around in the disability world far longer than I've had absolutely anything to do with it. It was remarkable how little autistic adults were being included in research around autism. So we've worked really hard at trying to do our own participatory research and in kind of changing attitudes around the importance of this in the autism research world…
When I started trying to do this in autism research, the push with reviewers was like, why would you even want to do this? Can you do this is this even, like a reasonable thing, and it was a completely different argument. Um, it was, it was a little bit mind blowing just how dehumanizing so many of the comments were coming from the autism research world around, like, ‘oh, you can't assume that, that people have enough, you know, insight to be able to reflect on their experiences, or I mean, just some really, really hurtful, hurtful attitudes.’ Um, there's been an amazing shift over the past decade and there's a lot more openness to including autistic individuals and research. There's a growing number of autistic researchers, which is fantastic…
Now, I'm a little bit worried that we're at the stage where now it's that people are much more open to it, they see it as a positive thing. But it's also a dangerous time, because it's really easy to tokenize people and to make it be very inauthentic. And then we run the risk of basically burning a lot of bridges and increasing distrust with the community because people have experiences where they were told they were going to be, you know, have power and they were going to be included and they were going to have a say. And it turns out to be very superficial and not very authentic and then that really taints the entire approach… We work so hard, I can't tell you, just the 1000s of hours that have gone into like trying to actually make things accessible, trying to really share power, it's just it's really, really hard work. And we don't always get it, right. I mean, we're constantly learning, we're constantly changing, we're constantly realizing, we thought that was, you know, going to work and it really didn’t. Like there's just so much work that goes into trying to really do this type of work, just to actually walk the talk…
When I started trying to do this in autism research, the push with reviewers was like, why would you even want to do this? Can you do this is this even, like a reasonable thing, and it was a completely different argument. Um, it was, it was a little bit mind blowing just how dehumanizing so many of the comments were coming from the autism research world around, like, ‘oh, you can't assume that, that people have enough, you know, insight to be able to reflect on their experiences, or I mean, just some really, really hurtful, hurtful attitudes.’ Um, there's been an amazing shift over the past decade and there's a lot more openness to including autistic individuals and research. There's a growing number of autistic researchers, which is fantastic…
Now, I'm a little bit worried that we're at the stage where now it's that people are much more open to it, they see it as a positive thing. But it's also a dangerous time, because it's really easy to tokenize people and to make it be very inauthentic. And then we run the risk of basically burning a lot of bridges and increasing distrust with the community because people have experiences where they were told they were going to be, you know, have power and they were going to be included and they were going to have a say. And it turns out to be very superficial and not very authentic and then that really taints the entire approach… We work so hard, I can't tell you, just the 1000s of hours that have gone into like trying to actually make things accessible, trying to really share power, it's just it's really, really hard work. And we don't always get it, right. I mean, we're constantly learning, we're constantly changing, we're constantly realizing, we thought that was, you know, going to work and it really didn’t. Like there's just so much work that goes into trying to really do this type of work, just to actually walk the talk…
2. How do you think we can better create research environments or research method assessments that are inclusive and accessible to autistic individuals or other disabilities?
So there's all sorts of different levels of participation. So we're talking about really how we get, you know, make research studies accessible for research participants. If we're talking about research participants, again, there's, there's how do we do the informed consent, right? How do we do the procedures, right, there's a lot of pieces, one piece of it is accessible data collection, whether it's qualitative or quantitative data collection. And then a piece of that is making sure that measures actually are accessible and reliable and valid and everything else. So if we're talking about that piece of it, I get, I don't want to make it seem like it's the only piece…
What often happens is a lot of the autism research has been focused on kids. And when you're talking about toddlers or something, of course, you're going to be collecting data from a proxy, generally a parent or a caregiver. What happens as we transition to adulthood is that not only does it become ethically more important for us to be collecting individuals’ data from individuals, the parent or proxy may also just really not even know the answers to do it. So what's happened is that we tend to either use a lot of either we continue asking information from proxies, which I can't tell you the number of studies that still like are asking young adults parents about their sexual activity, like why would the parents be the right person to answer those questions. So either we're inappropriately asking questions of a proxy, sometimes you need to go to a proxy, but oftentimes, it's overused. Or we're taking instruments that have been developed either for parents and making them into self report instruments, or we're taking instruments that have been developed for general populations and just using them with autistic adults. And what we've found over and over again is that your instruments that have been validated in other populations may have particular accessibility issues with autistic individuals, not everybody, some will be able to use any instrument without any problem. But if you're relying on only, including people who can use any instrument, whether or not it's adopted, you're gonna then not have as full range of the spectrum as if you make things more accessible. Then you might end up getting just wrong answers because people are misinterpreting things, or you get a lot of missing answers, or people just stop taking it. Then again, you end up with it with very biased data, either just data that's wrong, or data that's really biased to the people who can in fact answer it.
What we've found overall is there's a few kind of common themes that keep coming up as to why what makes instruments inaccessible. Some are just the language pragmatics, people tend to need more precise language. So we a lot of the kind of questions being asked might not the wording might not be precise enough, the response options may not be precise enough… Sometimes people have trouble with them having different answers to the questions in different circumstances. So what's running in the brain as well, but in this way, I would say this and in this case, I would say this in this case, I would say this... We often have trouble with just weird complicated phrasing or fancy vocabulary or just too imprecise vocabulary, figures of speech. So what we've done over the years is we've spent a lot of time trying to adapt instruments to make them more accessible and then retest them. We actually have a very large several million dollar grant right now from NIH to create a whole suite of survey measures that can be used to assess the effectiveness of services for autistic adults. So we're looking at 15 different outcomes measures that the autistic community has said are important to get them to help function, quality of life, etc. We're working right now on adapting them, and we'll be retesting them in a large longitudinal sample to make sure that, in fact, these are valid to be used. I'm hoping that by taking the time to do this work, other researchers will then be able to use measures that the autistic community feels are important outcomes and be as accessible as possible. Does it mean that every single person on the spectrum will be able to answer them directly? No, and we're creating proxy versions for people who won't be able to take part in a study even with accommodations and supports, but I think the more accessible we can make instruments, the wider a range of people we can include directly also, the more likely we are to get answers that are actually what we know. If we can't measure things correctly, then kind of the rest of the research falls apart.
What often happens is a lot of the autism research has been focused on kids. And when you're talking about toddlers or something, of course, you're going to be collecting data from a proxy, generally a parent or a caregiver. What happens as we transition to adulthood is that not only does it become ethically more important for us to be collecting individuals’ data from individuals, the parent or proxy may also just really not even know the answers to do it. So what's happened is that we tend to either use a lot of either we continue asking information from proxies, which I can't tell you the number of studies that still like are asking young adults parents about their sexual activity, like why would the parents be the right person to answer those questions. So either we're inappropriately asking questions of a proxy, sometimes you need to go to a proxy, but oftentimes, it's overused. Or we're taking instruments that have been developed either for parents and making them into self report instruments, or we're taking instruments that have been developed for general populations and just using them with autistic adults. And what we've found over and over again is that your instruments that have been validated in other populations may have particular accessibility issues with autistic individuals, not everybody, some will be able to use any instrument without any problem. But if you're relying on only, including people who can use any instrument, whether or not it's adopted, you're gonna then not have as full range of the spectrum as if you make things more accessible. Then you might end up getting just wrong answers because people are misinterpreting things, or you get a lot of missing answers, or people just stop taking it. Then again, you end up with it with very biased data, either just data that's wrong, or data that's really biased to the people who can in fact answer it.
What we've found overall is there's a few kind of common themes that keep coming up as to why what makes instruments inaccessible. Some are just the language pragmatics, people tend to need more precise language. So we a lot of the kind of questions being asked might not the wording might not be precise enough, the response options may not be precise enough… Sometimes people have trouble with them having different answers to the questions in different circumstances. So what's running in the brain as well, but in this way, I would say this and in this case, I would say this in this case, I would say this... We often have trouble with just weird complicated phrasing or fancy vocabulary or just too imprecise vocabulary, figures of speech. So what we've done over the years is we've spent a lot of time trying to adapt instruments to make them more accessible and then retest them. We actually have a very large several million dollar grant right now from NIH to create a whole suite of survey measures that can be used to assess the effectiveness of services for autistic adults. So we're looking at 15 different outcomes measures that the autistic community has said are important to get them to help function, quality of life, etc. We're working right now on adapting them, and we'll be retesting them in a large longitudinal sample to make sure that, in fact, these are valid to be used. I'm hoping that by taking the time to do this work, other researchers will then be able to use measures that the autistic community feels are important outcomes and be as accessible as possible. Does it mean that every single person on the spectrum will be able to answer them directly? No, and we're creating proxy versions for people who won't be able to take part in a study even with accommodations and supports, but I think the more accessible we can make instruments, the wider a range of people we can include directly also, the more likely we are to get answers that are actually what we know. If we can't measure things correctly, then kind of the rest of the research falls apart.
3. How do you hope that maybe some of these ideas will be adopted by researchers of other disabilities, like other developmental disabilities or intellectual disabilities?
So the work we've done up to now, some instruments we've only adapted specifically for autistic adults, but many we've done for autistic people, people with intellectual disabilities... Often there are commonalities, often autistic people can have an intellectual disability, so there's co-occurrence there. Sometimes there's competing accommodations, which are really important to pay attention to, because what might make something easier for one person may actually make it harder for another person. So our team purposefully includes autistic individuals who have intellectual disabilities. It includes autistic people who are nonspeaking includes autistic people with high support needs, it includes autistic people with very high educational attainment and not so high educational attainment where we kind of we purposefully have gone out of our way… so that the instruments can be helpful for a range of people. We're only going to test them in autistic adults. We're expecting that the way we're sampling, we expect that a large part of the group will have co-occurring intellectual disability, so I think that will be helpful. We're not going to be testing [other populations] in this particular funded study. but I think that they would also be helpful for people with other disabilities, especially intellectual disability, since we're putting a lot of effort into that as we're going along.
I think the general approaches can certainly be translated to other populations. I'd love for, there's the directive here, use these instruments, and then there's the bigger picture of use this approach and please involve the people you're trying to help in your projects, like that doesn't have to be just autism. And that's not my idea, like participatory approaches have existed since before I was born and this should be a lot more common than it is. Certainly, there's good participatory work being done with people with intellectual disabilities. Certainly, good work being done with people with other disabilities, and then again, with much of the works been done with people of color, and other marginalized groups that may or may not have anything to do with disability. So I hope some of its trends translatable. On a very practical basis, I hope that our instruments are going to be helpful for participants who might have, you know, a variety of different disabilities that can affect cognition, whether it's intellectual disability or traumatic brain injury, or who knows what else. As a researcher, I have to say that we're only testing it right now autistic adults, so I don't want to go say like, here, just don't go extrapolate to other things. I'm hoping that they would also be helpful, but they would need to be retested.
I think the general approaches can certainly be translated to other populations. I'd love for, there's the directive here, use these instruments, and then there's the bigger picture of use this approach and please involve the people you're trying to help in your projects, like that doesn't have to be just autism. And that's not my idea, like participatory approaches have existed since before I was born and this should be a lot more common than it is. Certainly, there's good participatory work being done with people with intellectual disabilities. Certainly, good work being done with people with other disabilities, and then again, with much of the works been done with people of color, and other marginalized groups that may or may not have anything to do with disability. So I hope some of its trends translatable. On a very practical basis, I hope that our instruments are going to be helpful for participants who might have, you know, a variety of different disabilities that can affect cognition, whether it's intellectual disability or traumatic brain injury, or who knows what else. As a researcher, I have to say that we're only testing it right now autistic adults, so I don't want to go say like, here, just don't go extrapolate to other things. I'm hoping that they would also be helpful, but they would need to be retested.
4. How have you seen intersectionality play a role in research and advocacy for autistic individuals?
I think intersectionality is so important. I'm afraid as an overall field and as the overall world, we don't pay enough attention to it. Because things get siloed often, and the truth is that individual people aren’t one thing. The more various different marginalized identities, or experiences or traumas or whatever somebody has been, it just makes things that much more complicated and so much more important to be thinking about... I have to make some more revisions to an analysis we did off of one of our projects, specifically looking at intersectionality as it affects autistic individuals in the workplace… You can't underestimate the effect of a lot of different identities in people's experiences. For example, in the workplace, one of the things we heard from our participants is that it can really affect disclosure. Because if you're already having to deal with discrimination against parts of your identity that you can't hide, then it may affect for example, how much more do I want to bring in here and do I actually want to even disclose my autism or ask for accommodations when I'm already facing discrimination, based on my race or ethnicity or my sexual sexual orientation or whatever else? I think it can have a big role. I think we are at the infancy when it comes to understanding. I think there's not enough research that's been done on intersectionality. But we know that people of color have lower diagnosis rates. Not because Autism is less prevalent, but because we're missing it. We know people get less access to services. I think the discrimination and stigma is quite different. We know the danger of police violence goes up with autism and goes up with being a person of color, the two together make it that much more of a potential risk.
5. How feasible do you think it is to take a universal design approach within the medical field? If so, what steps do we need to take to get there?
It's tricky. I like most of the principles of universal design. If we're thinking about accessibility, we generally do better health care for everybody. I'll give you an example of that. So I don't know if you've seen our AASPIRE health care toolkit, but we've created this whole healthcare toolkit, specifically for autistic individuals. As an internist, you know, the vast majority of people I'm seeing aren't in fact, autistic. I use the tools that are in our in our toolkit, right, with my patients who just have, lower health literacy or who have anxiety disorder, I mean the tools are actually helpful and by thinking about how do we make things clear, how do we communicate better, how do we know, how do we understand people's needs and preferences. They were designed for autistic patients, they were tested in autistic patients, though when I'm in the hospital, working with a patient that has absolutely nothing… to do with autism, I'll often pull from that, because it just, I think makes the care better. So in some ways, yes, I think it can improve care.
At the same time, I think there are some potential limitations of thinking about universal design, unless you're very careful about competing accommodations. Because, again, some, if you focus on Oh, I'm going to do things, this thing to make it easier on this person, you might actually be making it harder for somebody else. We do have competing accommodations. That's where I think, what's most important is being very conscious of the need for things to be accessible, for the need to communicate effectively, for the need to focus on these things, and then to be very person centered, in terms of what an individual person may need. That's why, for example, in our toolkit, we have our autism healthcare accommodations tool… I'm often asked to lecture about autism, and how do you take care of autistic patients and I can't actually really tell you, because what's gonna make it work for one patient may be the exact opposite of what's going to make it work for another patient. So I have and that's just within autism let alone if you think about all the different potential disabilities, all the different potential social determinants of health...
I like it, and I just want to be very cautious with it around, it isn't a prescription of this is how you make something accessible. It's these are the things you have to watch out for and pay attention to, and what makes it accessible for this particular patient in this particular situation. And are you thinking well about like, how to ultimately stay patient-centered. Some of it's just like website accessibility, somebody needs really high contrast, because they have low vision, somebody else needs really low contrast, because the high contrast is painful and distracting...You know, I teach medical students, one on one is start with open-ended questions. That works for most people and I truly believe you should start with open-ended questions. If you just ask open-ended questions without enough context and precision, it's going to be impossible for many of your autistic patients to answer, so I worry about blanket prescriptions. I worry about the like, Oh, well, you know, you have to make sure not to use jargon. Yes, we shouldn't use jargon. But when people I hear my students and my residents… either they're using a whole bunch of medical words and people don't understand it. Or what often happens is the removing all the medical words, which then means we're talking about these really vague ideas, we're not actually educating patients as to what they actually have, and how to actually talk about what they have, we're kind of then given this very superficial understanding, because we've taken away all the precision of the fancier words. Now again, I don't want to say oh, we have to make sure not to use any technical words, because in some cases, the technical words is what's going to make it more understandable. In some cases, we need to define and explain the technical words. In some cases, even if we define and explain the technical words, it's going to be really hard to understand. And we do need to actually use less technical words, which may, in fact, be more vague, and which may potentially, you know, have some drawbacks. So those are just the general principles of trying to be as clear as we can, trying to be as organized as we can, trying to be as specific as we can. And at the same time, adjusting for individual patients, or individual populations or building in some flexibility, so that people can have choices in how they receive information, how they give information, how they participate in their health care, and so on.
At the same time, I think there are some potential limitations of thinking about universal design, unless you're very careful about competing accommodations. Because, again, some, if you focus on Oh, I'm going to do things, this thing to make it easier on this person, you might actually be making it harder for somebody else. We do have competing accommodations. That's where I think, what's most important is being very conscious of the need for things to be accessible, for the need to communicate effectively, for the need to focus on these things, and then to be very person centered, in terms of what an individual person may need. That's why, for example, in our toolkit, we have our autism healthcare accommodations tool… I'm often asked to lecture about autism, and how do you take care of autistic patients and I can't actually really tell you, because what's gonna make it work for one patient may be the exact opposite of what's going to make it work for another patient. So I have and that's just within autism let alone if you think about all the different potential disabilities, all the different potential social determinants of health...
I like it, and I just want to be very cautious with it around, it isn't a prescription of this is how you make something accessible. It's these are the things you have to watch out for and pay attention to, and what makes it accessible for this particular patient in this particular situation. And are you thinking well about like, how to ultimately stay patient-centered. Some of it's just like website accessibility, somebody needs really high contrast, because they have low vision, somebody else needs really low contrast, because the high contrast is painful and distracting...You know, I teach medical students, one on one is start with open-ended questions. That works for most people and I truly believe you should start with open-ended questions. If you just ask open-ended questions without enough context and precision, it's going to be impossible for many of your autistic patients to answer, so I worry about blanket prescriptions. I worry about the like, Oh, well, you know, you have to make sure not to use jargon. Yes, we shouldn't use jargon. But when people I hear my students and my residents… either they're using a whole bunch of medical words and people don't understand it. Or what often happens is the removing all the medical words, which then means we're talking about these really vague ideas, we're not actually educating patients as to what they actually have, and how to actually talk about what they have, we're kind of then given this very superficial understanding, because we've taken away all the precision of the fancier words. Now again, I don't want to say oh, we have to make sure not to use any technical words, because in some cases, the technical words is what's going to make it more understandable. In some cases, we need to define and explain the technical words. In some cases, even if we define and explain the technical words, it's going to be really hard to understand. And we do need to actually use less technical words, which may, in fact, be more vague, and which may potentially, you know, have some drawbacks. So those are just the general principles of trying to be as clear as we can, trying to be as organized as we can, trying to be as specific as we can. And at the same time, adjusting for individual patients, or individual populations or building in some flexibility, so that people can have choices in how they receive information, how they give information, how they participate in their health care, and so on.
6. How can we shift the stigmatized way of thinking towards disability within medicine to help center the disabled voice and create the patient-centered accomModations that you've been talking about?
I mean, you know, we talk about the medical model of disability, and we talk about the social model of disability. And then we're surprised that medicine uses a medical model, like that's the name. We are largely taught to think about disability as an impairment within the individual. When you start off thinking about, you know, something as a pathology and something that is broken that now we either fix, or we throw up our hands and say we can't fix. That's not a really great way to approach this. But again, that's our medical model… So, it is difficult, and it's not. It's not impossible, because I think there is an important distinction to make around when we're thinking about disability, using actually a social model of disability. When we're thinking about particular illnesses, we may be trying to treat or cure, manage, etc it becomes a philosophical issue, but it also has really practical implications. What I find is the more we help healthcare providers really understand what the social model of disability is and how that affects the lives of their patients, I think it does make a difference. I'm often blown away by how surprised [people are] when I talk about a social model of disability, when I talk about kind of how disability is socially constructed. I always give my little living on a planet where everybody's deaf, you know, being hearing would be a disability and I explained that out. It's really interesting how often that idea is just foreign to healthcare providers, because that's not how we're trained.
You probably know that I try to use person-first language, when I talk about illnesses. I think it is really important that we say patient patient with HIV patient with cystic fibrosis patient with a substance use disorder, because those are the things we're actually trying to distance the person from, because we want to be thinking of the person first, and their HIV or their diabetes, or their cancer or whatever, as something that's separate. I think when it comes to disability, when we start thinking about it more as an identity, then it becomes a little bit easier for us as healthcare providers to figure out, well, then what do I do to help somebody with a marginalized identity, get the best health care they can, be as healthy as they can, manage their medical issues, be able to get access to the care they need.
The analogy I often use with health care providers, especially those of us that are older, is that being homosexual was actually a DSM diagnosis. When I was in medical school, my psychology professor was still talking about, at that point, she had changed it to everybody needs gay conversion therapy to just whoever wants it should be able to have gay conversion therapy, but that's not very long ago... And that's what I was, you know, learning in medical school. When I think about what's going to allow me to give the best care to my LGBTQ plus patients, I need to be really very aware of the barriers they're going to have to healthcare. I'm going to be aware of things that they might be at higher risk of having co-occurring [conditions]. I need to understand that I need to think about how to appropriately give them access to care, give them appropriate patient education, be able to help them no matter, and I can do that without necessarily pathologizing homosexuality... I can treat it as an identity, which then might need particular services or particular care…
Another place where it really becomes an issue is when we're talking about transplants, end of life issues, things like that. I find that we're often in a situation as healthcare providers, where we're having to kind of think a lot about, for example, patients that have some terrible terminal disease and does it make sense to even try to resuscitate to offer long term treatments, etc. People confuse disability with illness all the time and there's a distinction between somebodies underlying disability status and an illness that may be bringing them to the end of life. I'm often, you know, in tricky situations where, because somebody has an underlying disability and providers are making really inappropriate assumptions around their quality of life, or inappropriate assumptions around what they would want, or inappropriate assumptions around their prognosis when it's not the illness we're talking about. They're making these assumptions based off of the underlying disability and whereas very often on the side of trying to pull back unnecessary or futile care... I worry when we take that approach of, ‘Oh, my gosh, like, why are we doing this? There's no hope here.’ And we apply that to somebody who has a disability, because we're making assumptions on what their quality of life is. We know from research in plenty of different aspects of disability research that people with disabilities always rate their quality of life higher for themselves than other people watching them thinking that their quality of life is. So I kind of went off on a tangent, but I do think that that distinction between disability and identity versus illness actually has a lot of implications when we're acting in our capacity as health care providers. My job is to treat illness, that’s what I do.
You probably know that I try to use person-first language, when I talk about illnesses. I think it is really important that we say patient patient with HIV patient with cystic fibrosis patient with a substance use disorder, because those are the things we're actually trying to distance the person from, because we want to be thinking of the person first, and their HIV or their diabetes, or their cancer or whatever, as something that's separate. I think when it comes to disability, when we start thinking about it more as an identity, then it becomes a little bit easier for us as healthcare providers to figure out, well, then what do I do to help somebody with a marginalized identity, get the best health care they can, be as healthy as they can, manage their medical issues, be able to get access to the care they need.
The analogy I often use with health care providers, especially those of us that are older, is that being homosexual was actually a DSM diagnosis. When I was in medical school, my psychology professor was still talking about, at that point, she had changed it to everybody needs gay conversion therapy to just whoever wants it should be able to have gay conversion therapy, but that's not very long ago... And that's what I was, you know, learning in medical school. When I think about what's going to allow me to give the best care to my LGBTQ plus patients, I need to be really very aware of the barriers they're going to have to healthcare. I'm going to be aware of things that they might be at higher risk of having co-occurring [conditions]. I need to understand that I need to think about how to appropriately give them access to care, give them appropriate patient education, be able to help them no matter, and I can do that without necessarily pathologizing homosexuality... I can treat it as an identity, which then might need particular services or particular care…
Another place where it really becomes an issue is when we're talking about transplants, end of life issues, things like that. I find that we're often in a situation as healthcare providers, where we're having to kind of think a lot about, for example, patients that have some terrible terminal disease and does it make sense to even try to resuscitate to offer long term treatments, etc. People confuse disability with illness all the time and there's a distinction between somebodies underlying disability status and an illness that may be bringing them to the end of life. I'm often, you know, in tricky situations where, because somebody has an underlying disability and providers are making really inappropriate assumptions around their quality of life, or inappropriate assumptions around what they would want, or inappropriate assumptions around their prognosis when it's not the illness we're talking about. They're making these assumptions based off of the underlying disability and whereas very often on the side of trying to pull back unnecessary or futile care... I worry when we take that approach of, ‘Oh, my gosh, like, why are we doing this? There's no hope here.’ And we apply that to somebody who has a disability, because we're making assumptions on what their quality of life is. We know from research in plenty of different aspects of disability research that people with disabilities always rate their quality of life higher for themselves than other people watching them thinking that their quality of life is. So I kind of went off on a tangent, but I do think that that distinction between disability and identity versus illness actually has a lot of implications when we're acting in our capacity as health care providers. My job is to treat illness, that’s what I do.