All right. Hi, everyone. Thanks for joining us. I'm Jason Edwards. Pronouns he, him, his. I am the co-chair of the AAP Menar LGBTQIA plus community. I am medical director of the brain injury rehabilitation program at New York Presbyterian Brooklyn Methodist Hospital and an assistant professor at Cornell in Columbia. I'm now going to turn it over to my co-chair, Dr. Sophia DelFabro. Hi, everyone. As Dr. Edwards said, I'm Dr. Sophia DelFabro. I go by Dr. D. I am currently the medical director of SCI rehabilitation at the University of Kansas. I've been in this role for only about six months, but have done spinal cord injury for the last 11 or 12 years. I'm very happy to be part of this group. I'm happy that Jason found me, and we're super excited to have anyone and everyone involved in our cause. I'm non-binary. I go by they and them. And again, very happy to have all y'all here. So thank you for joining us. Great. Again, thank you. If you have questions throughout the presentation, regardless of topic, please ask. I want to emphasize that this is a safe place. I'm going to borrow something from our speaker today, actually, Ari, who says that cultural competency is an ongoing and lifelong practice. So please ask if you have questions. With that, Ari, thank you so much for joining us. Ari Layoc, pronouns he, him, and they, them, is a Virginia-licensed professional counselor, a certified rehabilitation counselor, and a certified brain injury specialist trainer. Ari works at Health Brigade in Richmond, Virginia, as well as Pride Inside, providing mental health and substance use counseling. Ari is a graduate of the Virginia Commonwealth University Rehabilitation and Mental Health Counseling Program, and is a current PhD candidate at VCU. Ari's counseling work is empowerment-based, working through, with, and around trauma, be that systemic, historical, and or single event-based trauma. He centers his work in cultural humility and liberation. Ari works for adults in the LGBTQIA plus community, persons who want to discuss their substance use, adults seeking a polyamorous knowledgeable provider, persons experiencing post-brain injury challenges, persons living with HIV AIDS, as well as adults seeking a kink-knowledgeable professional. Ari is one of the co-authors on changing the culture of neurodisability through language and sensitivity of providers, creating a safe place for LGBTQIA plus people. This is the first paper of its kind looking at neurodisability and LGBTQIA plus persons. Ari, thank you so much for joining us. Thank you very much for having me. It's really a pleasure to be here, and I'm very excited to have this opportunity. You know, asking questions is really helpful, really great. I don't know if somebody else might be moderating, however, in the chat box, I am, you know, questions in the chat box is totally fine. I can answer questions hopefully whilst looking at the slides and doing the thing. It's a great pleasure to talk about this, and something that is often really necessary for us to start talking about. Prior to starting, we had talked a bit about navigating gender, navigating sexuality, and really navigating the self and the identity of self. And vocabulary, this is new vocabulary, this is pieces of new understanding that can be overwhelming at times. Additionally, you know, we we're providing services to people, and we want those services equitable, and we want those services respectful. And part of that is providing that space or opening that door for a person to truly be themselves, to really be present, to be authentic in that presence. As we worked on this article, one of the things that we really found lacking was the intersection, the intersection of a neurodisability diagnosis and LGBTQIA plus identity. So when we use these letters LGBTQIA plus, a quick kind of language primer, and recognizing too that just because I say these letters mean this now, it doesn't mean that it will always be the same, right? We're talking about an evolution of language, and being aware that as language evolves, the meanings behind words begin to evolve, and really being present and open to that. So L, lesbian, G, gay, B, bisexual, T, transgender, Q, queer, I, intersex, A, asexual, and plus is that open phrasing for others who may not be named. The article was written in 2017, so some language may have changed, there may have been new language, there may be omitted language, however, focusing specifically on this article, lesbian, gay, bisexual, transgender, queer, intersex, asexual, and plus. So one of the things we found in doing a lit search, you know, we were able to pull 377 articles, but only 49 met the criteria for what it is we were looking for. And, you know, some of the problem areas we found was kind of this absent presence, the lack of comfort or safety coming out and disclosing. And we'll talk about that a little bit more at the end, but understanding the consent of disclosure. Just because I worked with a client, and a client may say to me, I'm queer, doesn't mean that I have the authority or the consent to talk to another prescriber and say, oh, well, you know, so-and-so is queer. And because we know this is a protected class, a marginalized class of persons, being cognizant that outing someone, so disclosing sexuality or gender identity without consent, outing someone without their consent could contribute to harm and could contribute to less or worsened care. And some of that worsened care is related to bias, lack of recognition, and inaccurate information, right? So it leads to inadequate treatment, decreased appointment follow-through by the clients or patients, the people coming to our services, and it contributes to health disparities. So in the article, you see the percentages of diagnoses over there. What we saw was that across diagnoses, there was sexual education or treatment kind of varied across diagnostic populations. And we specifically use this rather unpleasant word of breeding, that much of rehabilitation related to sex or sexuality was centered on breeding. And it was heterosexist and sexist at that. So somebody that a provider might identify as a man, focus really centered on pleasure for him. And for a client or a patient who is identified as a woman, breeding was really centered on it for her. And so there was this big omission in the studies of non-binary persons, omission of the studies of persons assigned intersex. And we also found a lot of, specifically for congenital diagnosis, we saw a strong relationship with paternalistic or infantilization, treating someone as a child throughout their adult life. The assumption of heterosexuality contributing to poor outcomes, specifically in the article, there's mention of lesbian and bisexual women having to repeatedly come out. And then the client-patient concern again, right, about being outed, or concern about unjust treatment. And one of the things that we repeatedly found was that through language change and through opening that space of, are you partnered versus, and do you have a husband, really changes and opens that door. So, you know, congenital, again, we meant, I'd mentioned briefly infantilization, the frequency of having relationships, right, friendships with paid professionals, parents, or caregivers. And there's that minimal socialization or peer connection. There's a lack of privacy, and there's a lack of conversation around consent, pleasure, boundaries, and safety. So when we don't talk to our children, or we don't talk to the persons with whom we work, or our colleagues, our peers, about consent, we may begin to lose that evolution of language. We may begin to lose the definition of, oh, this is my body, and that is your body. And I cannot touch your body, and you cannot touch my body without consent. And really having that autonomy and agency of ourself, right, learning about pleasure, learning about boundaries, and learning about safety. When we talked about, sorry, when we looked at the articles focused on acquired, there was acquired injuries or acquired diagnosis. There was some similarities related to a lack of conversations around sexual pleasure. And another piece that showed up was physical positioning. So we're talking about sex for pleasure. We're also talking about sex that may not have a goal, right, of breeding or reproduction. So that may include oral sex and anal sex. That may include parts of the body that, you know, our occupational therapists may be able to come and help with adaptive techniques, adaptive tools, maneuvers to help with that. And if we are not talking about sex or type of sex, and we're just assuming or we're expressing discomfort having that conversation, it's our patient, our client, the people with whom we work who end up missing out. Additionally, there's that lack of access to culture. And we will talk a little bit more later when we talk about recommendations. However, I'm using the word culture and specifically not saying lifestyle or preference or choice. That is a pretty frowned upon at this time. Historically, we said that, right? Historically, we said preference. Historically, we said lifestyle. I think sometimes we still do. And it's not reflective of the people with whom we're working. And again, acquired injuries and people with acquired injuries end up spending a lot of their time with paid professionals and miss out on some peer connection. And also learning or living in a space of stigma or misdiagnosis. There's a narrative in the article about a woman who missed out on treatment because she was misdiagnosed. And in the article where we found that, there was a relationship there for sexuality, for gender, for race. And she was mistreated and misdiagnosed and lost some physical abilities because of that bias. And there is some article, if you see down at the bottom, that some persons are opting for choosing or selecting euthanasia or suicide rather than having to be in the presence of this accidental and purposeful discrimination. So accidental or purposeful, still discrimination. I'm sorry. Can I intervene just one second? Absolutely. Thank you so much for everything you've said so far. I just wanted to let the folks with us know I have specific resources for SCI and disability and sex, too, for y'all. When we're done with the official presentation, I can submit those or however it needs to be done. But I have that. Wonderful. Thank you so much. Please interrupt me with resources. That's wonderful. I appreciate that. When we dip back into thinking about accidental or purposeful, there's some barriers there, right? And when we name these things, we can attend to them and maybe step out of the shame of maybe participating in or recognizing or seeing these, right? So misconceptions about gender sexuality, so assuming heterosexuality or assuming a person's gender. Misperceptions or bias. There's intersections of stressors, right? So when we start stacking our intersections of identities, we end up in categories. And some categories are treated really well and some categories are treated really unwell. So it's really important to be aware of that. Confidentiality concerns across treatment, which we discussed. Provider confidence to provide adequate care. There was a study that providers responded noting that they didn't feel confident. So they just didn't ask the questions, right? Because we're providers. We don't want to be uncomfortable. We also don't want to be wrong because our being wrong can result in misdiagnosis. And there's an ongoing need for us to continue this discussion. I'm so grateful that this conversation is happening. Because, right? There's an ongoing need to discuss this because there's a lack of evidence-based interventions to support that optimal and equitable treatment. Some of the really amazing, wonderful considerations that we saw in reviewing for this article was seeing that partners in queer partnerships report less stress related to illness and care work. That supportive environment and privacy may mean an increase of barriers or condoms and loving connection with partner. McClellan wrote a narrative piece with a participant who said, you know, being in a supportive environment means that I can be in my partner's bedroom or they can be in my bedroom and we don't have to, you know, try to find access elsewhere. Peer support groups, right? Yalom's universality leads to that increase in self-esteem and psychological well-being, right? Seeing that likeness, seeing that sameness. And when we talk about pride, that's what we're talking about. We're talking about being able to see ourselves in each other, being able to relate, being able to see I'm not the only one. And that this really wonderful quote from a parent that my personal thinking was clouded by my own unacknowledged transphobia, homophobia, ageism, and ableism. And this quote is specifically around being able to bear witness to their adult child having an enjoyable relationship with a partner through challenging the isms or the phobias that they were holding on to. And that's a really important part when we start thinking about what does recovery, what does rehabilitation, what does adulting really, what does living, what does childing, what do these things mean? And oftentimes looking at this article, putting the articles together, what these things mean is seeking resources. As Dr. DelFabro just shared, is having these conversations where we meet and we talk about maybe uncomfortable things, maybe the unknown things so that the unknown can become the known. So when we talk about recommendations, I touched on that briefly just there a moment ago, but avoiding terms of preference or lifestyle. And I like to give the example, when we think about lifestyle, when I go to my GP, my general practitioner, or my primary care physician, and I fill out the form, you know, name, gender, we're going to talk about forms as well. When I fill out the form and it says lifestyle, it says sedentary, active, it doesn't say sedentary, active, gay, trans, right? That doesn't even fit within the work that we do as providers. I'm so sorry, I have to laugh at the lifestyle thing. Okay. Yeah. And I think that's a really funny, great example, right? Like I went, I had gone to my doctor a couple months ago, and I was like, and it was the first time I had seen that question lifestyle that I, while I was in this kind of teaching mindset, and I just kind of started thinking, huh, that's a, that's a pretty good example because it doesn't say gay. Well, that's like, what, what exactly are we getting at with lifestyle, right? So, I mean, we can dive down that rabbit hole, but yeah. Yeah. And it's, it's because I want Judith Butler, and this is not part of the article, but I will tap into that just for a second. Judith Butler, gender theorist from 2015 writes, we want to categorize so that a person is digestible. We want to be able to put a person here and say like, oh, this is who you are. And we miss out on seeing the whole person. So yeah, excellent point. So essentially we, we want to put people in boxes so that we understand them based on our current sort of understanding of folks or topics or what have you. But, but that kind of narrative. Yeah. And when you say our current understanding, right, that's a, that's a very concrete concept. And we, we talk about neuroplasticity on a daily basis. We talk about that evolution. We talk about building that gray matter. And we want to put someone into something we already know, we've already conceptualized. So that's an assumption. And that's concrete doesn't necessarily allow for fluidity. And just being cognizant that much like neuroplasticity, we have that change that continues to move as we go across the lifespan. Really relevant, important to acknowledge there's no scientifically validated or ethical way to change a person's sexuality or gender. And a number of psychological organizations have really come forward more recently. But they've come forward saying, this is really harmful to even try or assume that this can be done. So there's no scientifically validated or ethical way to change a person's sexuality or gender. And that includes that if a person is heterosexual, they cannot be made gay. If a person is gay, they cannot be made heterosexual. And just being really cognizant of that. Using open-ended questions. So we talk about how does a person know that it's safe to come out or to be out? Our questions, are you partnered? Who is your circle of support? Who do you tell good news to? Who do you tell bad news to? Are you sexually active? OK, do you use barriers? How do you generally have sex? And leaving that question kind of open-ended, right? If you're doing video appointments, so people can recognize or see items behind you. A number of my books behind me are recognizable books from persons within the LGBTQIA plus community. So people can sometimes see that. By me also saying, my name's Ari. My pronouns are he and they. That often lets people know, oh, I'm sharing my pronouns. I might be a safer person with whom to speak. And when and if somebody does come out to you to say to them, A, thank you, and B, are you comfortable with me discussing this with peers as we talk about your treatment modalities? Are you out with other providers? Do you have a partner who may join us that you would like to join in this treatment planning? Because when we talk about family of origin, the family, that could be my bio family, that could be my adoptive family, that's the family from where I originate. And the family of choice, people who are part of the LGBTQIA plus community often have family of choice, right? Our elders are often, they don't have to be people who are older than us within the LGBTQIA plus community. That might be somebody who has been out longer than me. That might be someone who I can look to as a mentor, as an elder. And being aware that we all have people in our life that we may call uncle, or that's my brother, that's my sister, and we might not have that government relationship, that's that family of choice. And they may be the caretakers. And being able to have that conversation with a client when they do come out. More recommendations include considering the use of gender neutral language. And that includes on your intake forms, or your registration forms. Parent, partner, child. I'm so sorry, Ari, I keep interrupting you. But I just want to jump in on your just amazing ways that you're phrasing these things, and how appropriate they are. And I think especially, I don't know, at least lately, I've been thinking more about our kids and adults, or adolescents who are coming to terms with how they might feel. And I think in past times, it was just sort of ignored, or really not addressed. And now, you and I, and a lot of our community have known to say, oh yeah, I knew since I was three, or five, or what have you. And I think there's a need in the pediatric community for us to do a lot of training, as far as letting of how to train others, like you said, in the medical field of how do we navigate these waters? And I think that's on our skill set, for sure. And just more important in general, I've been really pleased with just anecdotally, friends that have having children lately, and they're seeking out particularly inclusive books. And there's like so many more inclusive books, which is wonderful. And I don't know, I think it's an interesting place to be in, in the sense that I feel like there's several stages of education, that those of us that are here, and those of us that are in different fields. But it's so nice to see sort of the upbringing of littles that are coming into a much more understanding, more safer world. So, sorry. No, no, please. I love it. And that's so important too. And we talk about across lifespan, just being aware that as we see children who are coming out, right? When do we start having conversations? How do we have these conversations? And almost every state has a youth program or a youth organization. In Virginia, we have Side by Side. We also have He, She, Zee and We. And He, She, Zee and We is really for the parents to have that connection and be able to talk to each other and build resource and build communities. And Side by Side is for the kids themselves. And they do section off into groups in ages or in cognitive relationships so that people can have that, like we had talked about before, it can have that peer connection and can begin to learn interaction styles that we learned with our peers, right? Like this, me saying like, that is definitely something I got from my peers as I was growing up to say like. And being able to pick those things up. You know, a big piece of our providership and what we do in providing care is exploring our own bias and personal beliefs. And to pick you back on that, I think a neglected population is our aging LGBTQ community. People that either readily identified in that group early on and have dealt with innumerable injustices and folks that for a variety of reasons, maybe now are coming, whatever it might be. I think elders in general, we're not doing well by, and certainly our brethren in that community, we're not doing well by. So someone else to think about. Absolutely. We know this isn't in the article. I wanna acknowledge that. And as we see our elders and as we see people aging at this time, this may be among, we may be living in a time where we will see people who are older adults who are openly queer and trans living in their older years. This may be among the first population that we will be able to bear witness to that after surviving the AIDS or HIV epidemic. And also after surviving harassment or discrimination being able to come out and live openly as themselves. And I use the word bear witness intentionally as that idea of being able to bear witness and say, I see you, I'm so happy I get to see you. I'm so happy I get to be present with you. And even challenging some of the ableist language of I see you, of I am in your presence and it's an honor to be in your presence and holding that space. So that's part of challenging our own bias and our personal beliefs to be aware of maybe the ageist beliefs we hold, homophobic, transphobic, queer phobic, ableist, to really step back and be present and to be authentic with a human and to have those moments. And I think it's tough when we're talking about providers and limited time and how am I supposed to do that by practicing. It takes time and it's uncomfortable and you're gonna mess up. I mess up all the time. That's part of being able to explore and evolve across lifespan is by looking back and maybe cringing a little bit, being able to, I will see if I can post the article link, being able to look back and cringe a little bit and saying like, oh, right, not I'm ashamed I did, rather, oh, wow, I've really grown since that time, right? Exploring our bias. I wonder why I believe that. I wonder where I learned that. And it's not a judgment. It's just, I wonder why, where did I see that? We watch movies now that we used to watch as kids. So I'm 45 and I watched the movies I used to watch as kids. And I'm like, oh my goodness, no wonder I had that bias, right? So just being aware, taking the chance to explore. That's a great, can often be a good segue into talking to folks who are really uncomfortable with the idea of queer and all of the intricacies as you've discussed about is saying like, gosh, like it doesn't need to be a static position. Maybe I, like you said, I believe it. One thing at this point in my life and now thankfully I've grown and I can use new information and maybe it's scary or maybe whatever. But I think that's a really good way to, well, not only is it a good way to phrase it, but it's reality. We all change. Hopefully we all change as we grow and learn and all that. But I think particularly for people who are concerned or it's hard to move on about how they feel about certain things, maybe that's a good way to start the conversation. Yeah. And providing that space to have that conversation, right? So that might mean, excuse me, that might mean saying to someone, oh, I don't think I've heard about that. Can you share more with me? Can you explain to me where you found that? Can you explain to me what that means to you? Right, because I might hear something and say, that sounds really homophobic. So it might be helpful for me to say, I need you to clarify, what does that mean for you? Because, right, just like, and we had this conversation, we used to say head injury and we no longer say head injury, we say brain injury. Language evolves, our treatment evolves, our interactions evolves, and how we navigate and move to provide services evolves and changes. And then review and update admissions and intake forms. Changing those, keeping them up to date. Again, like maybe not spouse, maybe it's a partner. Maybe it is more about the person with whom you're providing services and not the 100 to 1,000 that you had provided services to already. And then we also want to start talking about our lifelong learning. So when we talk about cultural competency, it's an ongoing practice and a lifelong practice. To also be aware that within the theory of cultural competency, right, that the theory of cultural competency, the constructs hold on to humility and the constructs hold on to like this understanding that we are not truly competent. There is no end point. This is not a finality of learning. It is continually being aware that we have the ethical, right, AMA, APA, ACA, National Association of Social Workers, we have an ethical responsibility to maintain our lifelong learning. Participate in education to, like this, education to address prejudice. You have all the films, scientific readings, and there are all of, there's these wonderful poets, there's musicians, there's scientific studies. So you have your evidence-based learning and your evidence-based research. But as we discussed when we first started, there's a dearth of research. So also being aware that there are plenty of community books and books that share narrative understandings while recognizing that a single narrative is not reflective of an entire community. And in your non-discrimination policy, specifically name that you do not support or permit discrimination towards sexuality and or gender identity. It's important to name that. Members of the community are looking for that. They're looking to see a symbol. They're looking to see a statement in your non-discrimination policy to know that they can at least be safe enough just to get treatment. Inclusive research is a must. It is extremely important that we are providing or participating in research to provide the services. And I left this quote, which is part of the article because I find it to be so powerful that it is an inaccurate assumption equating equality of opportunity with equality of outcome. Absence of recognition of individual differences in needs results in discriminatory and oppressive services, perpetuating inequality and discrimination. So being aware that not everybody, just because the doorknob turns the same way for everyone doesn't mean that there is that mutual access, that there is a reasonable access. It is important that we provide those opportunities for people so that they can have access to the care. So let's talk, ask questions, bring up comments. If I don't understand, I will ask for clarification and maybe say something that feels a little uncomfortable to learn and to try, right? Because that's part of this process. And I am looking up because I am trying to get the DOI for the article so that I can post it in the chat box for everyone. I had prepared a number of things, that one I did not. So I appreciate your kindness and grace in allowing me to try to enter a series of numbers while also trying to maybe appear moderately still present. All right, I really liked that quote. You know, regarding inclusive research. So I remember doing a podcast, I think it was probably back in 2016 with the CEO of one of the large neurorehabilitation centers and speaking about the need for more research in the LGBTQIA plus persons with disability. And I remember being very excited at the time because we talked about some of the new federal data requirements. So in 2015, the centers for Medicare and Medicaid services issued rules requiring all electronic health records that are certified under meaningful use to have the capacity, and I'm gonna stress capacity because I think I had some misunderstanding there, to record change and access both sexual orientation and gender identity. At the time, I thought this was going to create a boom in the amount of available data and studies on this patient population. And at least anecdotally, I don't feel like I've seen what I was expecting and then in looking back, I realized that all they said was you have to have the ability to do this. There's no requirement to do so. And so, sorry, that was a little long-winded, but my question for you is specifically about, you know, the paper talks about how people with LGBTQIA plus people with neurodisabilities may conceal their sexual orientation or gender identity out of fear of discriminatory care or out of fear of maybe losing their job but that somehow gets shared. It seems like a difficult situation and where we need this inclusive research, but at the same time, including people isn't without some element of risk. So it feels like kind of a battle on multiple fronts. Do you have any thoughts on kind of how to best go navigate this? You know, thank you for that question. It's a very good question because it's, we need the research, and I'm going to use some words that you did not use. We need the research. How do we ask people to put their lives at risk so that we can get more information, right? And I would propose, you know, based on this article, based on some other reading pieces is that it's first exploring our bias, first exploring. And when we have a coworker and we hear a coworker say something that maybe it's not intended to be derogatory, however, we received it as derogatory, to say to our coworker, can you explain that to me? I don't think that joke's funny. I don't understand that joke. Can you help me to understand why that's funny? Or whatever language works for you, but to also say to your colleagues, right? And if you're working in a peer support environment, I run a lot of group meetings and group gatherings, and when we make our group agreements, that's one of the agreements, is that we will not be derogatory to people. We will respect each other, so that when somebody says something that is homophobic or transphobic, we have a conversation and say, hey, that's disrespectful. That doesn't feel good. Oh, well, that's my personal opinion. Well, your personal opinion is harmful, and it's hurting me, so this is not that space for it, because that's discrimination. That's awesome, Ari. I really like that. And especially in the workplace, I feel like a lot of folks are obviously dealing with all those types of transgressions, and you're like, what world do I do about that? And I like your approach of what you said. And two, honestly, sometimes turning it on people a little bit of saying, sometimes people are quote-unquote more comfortable with sexism as far as jokes, and if you can just say, well, gosh, if I was a man and I said blah, blah, blah, how would you feel about that? They're like, oh, that doesn't feel so great. And you're like, well, hey, welcome. That's how it feels for me. I mean, it's a gross way to handle it, but I think for some people, something like that can be helpful. But yes, obviously, the more inclusive we all can be, the better. I apologize. Go ahead. Please do not apologize, Dr. Please. And part of it, too, I'm thinking about, too, is where are we as providers? How often do we go into the community? When we have the opportunity, when it's safe, masked, vaxxed, all the good stuff, where are we in being present in the community so that people know they can trust us or that they might be able to trust us, right? So is there volunteering opportunities? Is there, you know, in the waiting area, what, like I had said, you know, there's books behind me, so people in the community will see the books behind me, and they say, oh, okay, that person has a book on their shelf that says gender outlaw or transgender care, or, you know, that person might be able to see me and provide services to me without doing further harm. Absolutely. And it's like, so on my work badge, there's two little holes. So on one hole, I have, like, it's a heart-shaped badge that has just the rainbow, and then on the other badge, it's a non-binary little flag. And I'm, you know, time offline, we can talk about how I present myself at work, but all things considered, you know, I appear as a very safe person for folks, but I also am very well aware in every workplace I've worked before, you know, that was not possible. And probably even displaying those pins was not possible. So I have struggled immensely as a physician, as someone who really, as part of the community, and as part of someone who really wants to attend to the needs of this population, you know, how do you do that, and also, you know, not intentionally out someone, and not, you know, like, there's a lot of nuances to it, as you've spoken to, and it's nuanced, and it's nuanced in inpatient care versus outpatient care. Honestly, I think it's quote-unquote easier in outpatient care, because, you know, your staff and your clinic may do X, Y, and Z, but then once you're in the room with the person, you get to be who you are, and, you know, and really sort of frame that interaction. Whereas I think sometimes in the hospital setting, it's a little bit harder to do that. And so one of my, you know, on my checkbook of things that I really want to accomplish, you know, is making hospital systems just more welcome, and without it being, like, a big deal. And by that, I mean, it's, like, ideally, like, it shouldn't be a big deal, you know, like, we should just be accepted, and, you know, like, that at least in my brain is, you know, you just are who you are, and life goes forward, and we don't need to make something different or, you know, like, oh, this is a different person, like, we should somehow treat them differently now. But I understand that there are a lot of things that need to happen, obviously, in between that. So it's hard, like, we're in a weird position, for sure, I think, as people and as caregivers. And there's a couple of spots, too, that, you know, I hear you talking about, and also reflecting, too, about research is so much research is done via survey. Why can't we add multiple genders to the survey? Like, that's a pretty reasonable thing, right? Sexuality, why can't we add sexualities? It's a survey. And it's often, you know, that's how we get that feedback, right? And that's how we can say, maybe not even having to, you know, call somebody out by their name. Sure. But we have that realization. And, you know, part of me, you know, having worked in rehabilitation settings, when I hear, like, the question of, you know, how do we do person-centered care, when I am really having a hard time recognizing that I am a person, because I have all of this, right, to do, is to take that pause, to take that breath. So this is the mental health person kicking, right, is to take that breath, give yourself grace, and just say hi, use gender neutral language, touch in, touch base with folks. If you need to make an asterisk in your noggin to remember, this person, I want to make sure that I make direct eye contact with this person today, just so that they know that we are connected. Or this person, I'm going to make sure to, you know, give a little bit of an extra wave to today, to make sure that we are connected. It is the smallest of those non-verbals sometimes, right? Within queer culture, there is a thing, there's an eye contact thing, right? You're going in the store, you might not look at anybody else, but when you hear that keychain jangling, you know somebody has their keys connected to that belt loop, you're going to look up, make eye contact, right? It's these little non-verbals. And for people who are part of the community, they might be recognizing that slang or that connection, others might not. Yeah, and I totally hear you, but I also hear, especially in the first verbiage that you gave, like if we were all on point all the time, we should be doing all of those things, you know what I mean? Like that's how we should be as people, as humans. And we're human and we fail and we don't do it. But I love that care in which you talked about that. And I, that's how folks feel cared for. And, you know, regardless of what you're going to say after the fact, you know, feeling cared for is kind of number one. But I absolutely, just the, you know, when you hear the queer sign, quote unquote, and you're like, oh neat, okay. And as we, you know, continue to grow and continue to do that, that's opportunity, right? And I'm seeing that we're getting close to that five o'clock time and I'm enjoying this dialogue. I also want to, you know, just double check and reach out as I put my hand too close to the kitten run block everything, sorry about that. Does anybody else have any questions or ideas or topics they want to talk about in providing this safer space in opening this door or inviting others to come into neuro treatment, neuro rehab? Please feel free to type them or ask them. I don't want to have too much quiet space. All right. I'm going to, I'm going to bring up something just because I like something that Dr. DelFabro said too, like just that small act of the pens and putting people at ease. I mean, one of the things that you talked about is this idea of chosen family. And I think that's really important in the LGBTQIA plus community. And, you know, I've, I know people that have gone through instances where let's say that one person is incapacitated and can't make decisions that can immediately fall to biologic family who may or may not be involved and may not know what this person wishes. So that's, that could be a full talk on its own. So I don't want to get too bogged down there, but I just, I, I just wanted to say, I think sometimes those small things, like Sophia was talking about, I mean, you know, I just don't want us to take that for granted. And that's, that's when our relationship with legislation starts playing a role, right? Is being able to see, you know, well, my, you know, my provider insurance, I have to follow what, what the legislation or what legally I am, I am mandated to do being able to say, you know, I'm, I'm fighting for legislation change. I am fighting to change and be an advocate for the community so that a family of choice can, can have the ability to make choices, to help with rehabilitation, to help with treatment planning, to help with community connection, right? When the family of origin says, we will not take this person to this place. I mean, we will not recognize this family of choice may, and what do we know about wellbeing? What do we know about rehabilitation? Right? Those things are, those are intertwined. Yeah, absolutely. I, and I super applaud you for the work that you're doing. As you said, I mean, I think our family of choice, that's a great way to put it. There are, gosh, I mean, I don't know that we could ever put a number to it, but I think most of us have a family of choice rather than our, our family of genetics. And I hope that the world in the future, you know, we're able to make those more connections, more obvious to lawmakers and, and everyone to say, you know, gosh, like these are the folks that are certainly more not necessarily more capable per se, but more in line with who, who this person actually wants, which is what the goal is, you know, they're there who know who knows the person. And I, gosh, I, I don't know, again, I'm just, I'm amazed at what you're doing. So thank you so much for your work. It is super my pleasure. Also, I am very excited at what it means for a patient or a family member or a colleague to see those buttons on your name tag, because you're, you're providing that space in the work environment. You're providing that space or at least hinting at that space, right? We cannot hold up this thing individually. We have to be a collective and collaborate. Yeah. And I'm, you know so I, I share an on unit office with a couple other people, but we have like our own little sort of cubby area. And so I have like sort of the, the newer sort of overarching, you know, inclusive flag. And then I have the non-binary flag and they're just like hanging freely on my wall, you know? So like, I feel like, I think it's important to do both things, like to have things available that people can readily identify me as someone who a part of their community or not. But I do think it's important to put my place in there and say, gosh, you know, I think there's a differentiation between ally and not, which can be a whole other conversation, but you know, I, I try and put it out there, but not be, you know, someone can approach me about it and just sort of view how I'm presenting myself. And without it being like, I need to like put this in your face kind of thing. Yeah. And I saw somebody unmute and I was just going to send them a little chat just to say, you know, would you like to ask a question? How are things? Yeah, totally. Thank you so much. All right. This is a great talk. I was, I was really curious to you. You had mentioned how important language is and making sure like the intake forms and the, the notes can be as inclusive as possible just to show people like that they are in a safe space or in a, you know, just kind of a background way. Like you mentioned, I didn't know, do you have any good resources for like what languages is preferred? Because I know that language being so fluid and changing constantly, like we may adapt our electronic medical record now. And then in five years, we want to make sure that that language is still appropriate and still all inclusive. That's sometimes hard to piece together. So I didn't know if you have any resources to help with that. And, and I would even say not, not to not to be overwhelming, but five years, like that you, you are looking real far in the future and I want to celebrate you. And I, I Fenway Health has an inclusive intake form that is accessible and open source. It's in the Fenway Health trans clinic. They have a really wonderful intake form. The only thing we don't historically, we used to say preferred pronouns. And we don't really say that often anymore. Now we just say pronouns would be our pronouns. Right. Cause 45 as the child of the nineties, we used to say sexual preference and we don't say that anymore. So again, we, we evolve and our language changes. So Fenway Health is a really great resource for a fairly rockin intake form. And really even just looking through, like as Dr. Del Fabro had said, looking for sexist language, looking for something that assumes, oh, thank you. Look at that. It's right on there already. The teamwork here is like amazing. Sorry, I get super excited when I see things like rocking out. It's, it's looking through for that, look for sexist language. I would also encourage you to, to reach out to your local community LGBTQ organization. And in Richmond, we have diversity, the diversity center, Albany, New York, where I used to live has an organization. I can't believe I just forgot the name because of course I did. But any of your local community centers will often have an advocate or a resource who will look at your forms and help you revisit or update your forms. I think it's totally great and wonderful to also kick donations to community organizations to do fundraisers for them, providing so many services for communities who really benefit from that care. Um, maybe even going and talking about brain health at a community organization and partnering. Putting that little buzzword in there. So often have advocates that will read your, um, read your forums and tell you like, Hey, try this. Or have you tried this? There's, there's some great resources in your local communities as well. Um, and again, I, I'm sorry. I feel like I'm like interjecting on you like completely this whole time. Um, I just, I noticed, I'm just looking at the time, um, and I want to make sure that our guests are, you know, um, if, uh, Sean, I guess I'm going to put, put this out to you as, as far as I have several resources. Someone asked earlier about sexuality. Um, and can I just send those to you? Um, that can be distributed. Is that okay? You can actually post them in the member community. Oh, well, that's true. We have technology, right? Okay. Uh, let me see if I can accomplish that. You don't need to do that right now. We can follow up. Yeah. For anybody not a part of the member community, please feel free to join. Um, it's for, it's all inclusive. Um, you know, I think it's going to be a great resource for just kind of getting this off the ground. So honored to have Ari as our inaugural speaker. This was an amazing, um, talk with great discussion. We had planned for it to be 30 minutes, but this was so good. I just felt like we would continue with this. So, um, maybe what we'll do, I think is we'll table the networking piece. Um, we'll find a future date where we can all get together. Um, great discussion. Ari, thank you again, Dr. DelPapro. Thank you so much, Ari. We really appreciate it. It's, it is super duper my pleasure. Also thank you all for like, I don't know, exploring something really vulnerable and taking a chance at being wrong and taking a chance at being right. And, you know, doing the stuff and things that we are ethically supposed to do and doing it to continue to and evolution evolving. Thank you. You're so awesome. So I hope we can work on a project in the future. Yeah, I'd love to. All right, everybody. Now I want to give a special thanks to, to, um, Sean and Emma for their help today for AAP Menard. Um, great session, everybody. And, uh, look, be on the lookout for, um, future sessions. Ari, thank you again so much. My pleasure. Thank you everyone. Bye everyone.

LGBTQIA+

neurodisability care

inclusive language

barriers

recommendations for providers

advocating for legislation

equality

inclusivity

optimal care