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Hi, everyone. Welcome back to the thoughtful counselor podcast. This is Dr. Stacy Litam and I am joined today with my esteemed colleague and dear friend, Dr. Jose Tapia, UCLA, Dr. Tapia-Fuselier. How are you doing this morning? I'm doing wonderful. Thank you for having me. Certainly, I am so excited to have this conversation with you. You have actually been on my mind since early on in the summer, when I taught my human sexuality course and realize that there are a lot of things clinical counselors, marriage and family counselors, sex therapists just have a lot of questions on when it comes to promoting disability responsive care and supporting inter abled partners. Yes, I 100% agree with you. And a lot of that in my own experiences, feeling like I didn't know a lot in that area, or what to do.
And so my background is in rehab counseling. So very individual focused, it's holistic in the sense of we look at all aspects of the person, but it was the way we worked with mostly and trained individually. So when it came to couples and family work, I felt I didn't know what to do. And then looking in the disk, what was available to me it was it was it was so hard to find resources and support.
I love hearing this perspective of how you got to this place, because they think that so many of us find ourselves in this space of oh my gosh, I don't feel confident I don't feel competent to work with this population. And rather than waiting for someone else to do the work, you dove right in and said, This is what I want to learn about, this is what I want, what of my areas of expertise to be in and what an expert you are.
Well, I appreciate the labor. But I will say I am a person with knowledge I you know, the I struggle with being an expert in most things, but that's my own stuff. But I appreciate that. And truly, it Yes, and you know, it's interesting when I when I look back, this was around 2014 and 2015, excuse me, where I was working at a post acute traumatic brain injury facility. And while I felt very comfortable and confident in what I was doing within an individual, I felt very helpless in many ways and what how to help a couple and or partners in relationship after something happened. So many cases it was either an external force and internal force, so either a stroke or traumatic brain injury of some kind, and it there are so many changes to the person's life. And so many changes to the system, family system life and I, I just found myself wanting to understand more wanting to figure out how do we actually do this therapeutically, if we're doing relationship counseling, or family counseling or family therapy. And working with, with the six of us and you know, with all of our different backgrounds and areas of knowledge and experience, it just seemed like we weren't we weren't coming at it from a couples or family lens, it was very much focused on the individual. And so that's what really got me interested in exploring this further because, you know, for over two years I heard story after story of just the impact that related to the changes on responding to the disability, all of those pieces just it seemed important to explore so that's what pursued me to get my PhD. And I kept in that space that is an area I continue to I grew in I became trained in emotionally focused therapy and I said this is my world I want to end now what does this look like for inter abled relationships? And guess what? in couples literature, there's not much about how to support couples or relationships, or there might be some partner with a disability. So I was like we need to do more.
Yes, absolutely. And I love emotionally focused therapy, attachment systems and attachment patterns. It's something that once you learn it, you Cannot unsee it, you see it everywhere?
Yes, everywhere you feel it up, it's okay. Hmm.
So we talk about disability, I want to do a bit of level setting to make sure that our listeners are all on the same page. So when we use the term disability to whom are we referring? What kinds of experiences are we referring to?
That's a very good question. And, and I think so there's going to be a few things I share with this. So in, in my research, I identified folks with disabilities using the Social Security Administration definition, because those are the folks who are able to get you know, to services based on the categories that they fall into. We're talking about emotional, psychological, physical, cognitive limitations, either from birth either people born with disabilities, or people who acquire disabilities in life. In my work, I use the term inter abled. And that term comes from a book from Ben Matlin, which I think is a great resource. And it's important to understand that inter abled itself is not a catch all term, it doesn't fit for a lot of folks, a lot of partners were maybe a part one partner has a disability. And that may not be a label that they utilize. So I think that's important for listeners just to take into consideration that we want to always, you know, check in with chicken with the partners, right? How do they How do they see the relationship? So I think that's just, you know, when we think about language, that's something that I've just continuously worked to figure out. How do we do this from a research standpoint, right? How do we capture voices? Who may identify differently within this community? So yeah,
yeah, I think it is. so critically important to be mindful of the language our clients use, and where some folks really honor that person, first language, you know, person with disability, other saying, No, like, I'm a disabled person first, this is the way that I, you know, see the world, this is the way that I navigate my experiences. And so I think it's really important that you see me as this identity primarily, and it becomes so fundamental to who they are. That really important reminder,
no, and you bring up such a good point. Because this happens, this is happening, you know, when we talk about when people get, you know, maybe they take, they take a pause, because they're not sure what to do or what to say, it's so important that, well, there, there may have been a movement to be to speak from a person first language, that there is also identity, first language as well. And just because we may start by addressing someone in person first, you know, being corrected isn't a bad thing. It actually helps us do better, right? It helps us be more connected to our clients, because we get to understand them better. So I think, you know, when folks get caught off guard, by that it's important that might happen, you know, language is so nuanced. And it is so important to understand what clients and where they're coming from. As you know, folks who may acquire disability later in life may not identify as a disabled person. Whereas folks who are born with a disability may have a different journey. So we always want to be mindful of those pieces.
So being open and being humble, when those those nuances happen. And when clients let us know that we've used a language or a term that they don't align with. So what are some other challenges that folks may face either with acquired disabilities or with inter abled relationships?
Yes. So there's so many layers, right? And it's one of those funny counselor words, it depends. But some off the bat that come to mind or, you know, when we consider just the age, we always want to consider development in general, right development is so vital to how we conceptualize how we understand where the person is in their life. So part of the development is, you know, if they're in their 30s, or 40s, and they acquired disability, we do want to, we do want to understand, you know, what is the family looking? What does the family look like right now? Right? What does the system look like right now? Are their children involved? Are their partners involved? And when we when we come at this from a relationship therapy standpoint, what is the relationship? What was the relationship like for the disability was acquired? And what is it like right now is oftentimes unfortunately, although this is not ironed out so clearly in the literature, but there are references to this of just an increased rate of divorce or separation among folks who may acquire disability and we want to consider the stage of life they're in because what we know developmentally is folks who are in who are in the aging community, there is an expectation that bodies will change. There's an expectation that limitations may occur. Right as we age, so those types of relationships are more, for the most part, I can obviously I'm not going to, I don't want to generalize, may able to adapt to and respond to the disability needs within the relationship, because it's an expectation we know this is coming. Whereas in the in our society because of our beliefs around folks with disabilities, it tends to be like, well, that cannot, that won't happen to me, right? Or, you know, if it does, why me and there's this almost grief process of loss of access, right? Some folks depending on kind of what the things that they may experience on a day to day basis in terms of change in quality of life, or what or what whatnot, they may encounter some additional emotional experiences. And how the relationship responds is so so important. Oftentimes, what we see is depending we have to think of intersecting identities when it comes to like cultural pieces, and all those other layers of folks identity, where the if we're talking about a monogamous partner, or just dyads, that are together, one partner may automatically take on the caregiver role, they may just automatically enter into that space without being asked. No one has said anything. It's just an understood I'm, I love you, I'm here with you. That's what I'm doing. Now, there are limitations to that. And there are there's an impact if that continues to do where we know in the literature where, where we talk about caregiver burnout. And it really depends on the on the partnership, right? It depends on the needs of the disabled partner, or the partner with the disability, and kind of how the other partner kind of steps in to facilitate either needs or whatever, or whatnot.
So there's levels there, we want to understand that as therapists, right, how much of how much is the non disabled partner contributing or assisting in day to day activities, as it relates to their earning with the disabilities, daily life. And what are ways that may be creating some additional layers of stress that prevent them from really connecting, right, it becomes more of a I'm caring for you, and the kind of roles that they embody in terms of partners and loving each other and supporting each other, that may shift in terms of balance. And it's a lot for many folks that unspoken, where we don't talk about the differences in the balance and the shift. We there's a sense of it, for many folks, where we made the for example, the partner with a disability doesn't want to be a burden, right? So they may try to overcompensate by by doing certain activities or whatnot, where the non disabled partner might also not want to say anything, because they don't want to hurt their partner, that's often a dynamic that happens, they don't want to say something that there may be tired, or they might be stressed, or they may be just exhausted, because they don't want their partner to immediately experience you know, that sense of your it's your fault, right? It's because if you and that's a lot of internalized messages that are that are experienced, and they want to and I just want to frame this, and this came from my dissertation work to have this all comes from this ablest society that we live in these messages that having a disability means you're not, quote unquote, normal, you're not quote unquote, neurotypical right. And so those messages are just, they they evolve it when someone acquires a disability, because we, those messages are internalized, and often, they're unspoken, we don't talk about them, we don't make space for them in relationships. So from a relationship therapy standpoint, or counseling standpoint, it's so important that we make space to explore those pieces, you know, how are they making meaning of their experience? Now? What are they doing to engage with and respond to the disability together? Not so much individually? Just, you know, separately and individually, but together? How are they doing this?
Gosh, you've given our listeners and myself so much to think about and so many different layers to reflect on and roll around. And and I think one of the pieces that stands out to me, is this this influence of caregiver burnout. And I guess I'm curious, is there in a relationship or an association between inter abled partners where one person is very much a caregiver and and perhaps that how that changes the level of intimacy or sex within those dyads?
Yes. So yes, there is. And this is more related to again, what are they doing for their for their partner with a disability, right? How much are they contributing, so if I'm thinking of folks who may be and again, this varies from every Every person who acquires a disability may respond to differently may or may adapt differently. So I'm I'm thinking about more, I'm thinking about other cases where there may be more impact to daily daily activities of quality of life, those pieces where the where the non disabled partner may have a bigger role in supporting their opponent with a disability. But I'm thinking of situations where there may be a lack of control and bowel and bladder, right, so maybe their non disabled partner has to step into assist, I'm thinking about those assist with bathing and changing and all those other pieces. Again, I'm speaking my experience and research and area of knowledge and where I'm currently spending my time are folks who acquire disabilities, this might not be the same case for folks who are, who are born with a disability and who are in relationship and navigating those experiences I'm kind of speaking to, I'm speaking about those who, you know, may not have had this as part of their dynamic and then now now it is, we want to consider those widows, those differences in in lived experience in their journeys of being a human right, we want to be mindful of those. I'm thinking as we as we look at folks who acquire disability in navigating those experiences, a lot of there's there's some qualitative work that has been looked at to, you know, look into the experiences of these relationships. And I will say they're, they're outdated, I would say, but the stories themselves are very relevant. It's more so when it was published, where folks may feel like an infant, they may feel like I've regressed to an to a baby, my partner's taking care of me changing me bathing me, feeding me. And it just, they their sense of autonomy, their sense of identity shifts in many ways. And sometimes you don't make space to explore that or talk about it, because I'm going to tell you this and it's very important that listeners take this in, we struggle to talk about the uncomfortable. We live in enable a society we need a name disability as a phenomenon, it's not you know, we have folks who like to use differently abled except her using other words, no, we need a name, what it is, it's a disability, we don't want to erase that narrative. And so I think we have to be comfortable with exploring those pieces. And a lot of the times especially it's fixed, I now go back to the, to the couples or to the diet that, um, something that came from my dissertation research as well was, therapists are insecure with themselves, they were nervous, they were extra cautious. They didn't want to say the wrong thing, right, a lot of care and love. And that create that meant their actions were different. That meant they ended up doing something different, they may have gone went in a different direction, they may have evaded disability in some capacity. And we can debate it, it is right in front it regret whether we want to believe it or not, or sit with it, they may they're going to navigate this as a as a relationship. So what what is our role in that same as we talk about race and same as we talk about other other identities, gender, etc, it all plays a role in the relationship dynamics, whether we want to name it or not, and you know, we do harm when we don't name it, and explore it and be comfortable with the uncomfortable. I'm going back. So, so yes, this sense of for the partner with the disability feeling like, you know, their their identity is some is compromised, right is shifting and changing and, you know, depends. And again, oftentimes, if their non disabled partner immediately steps into, engages in all these daily activities,
that might play a role in how they're connecting from intimacy, intimacy, and point there might not be intimacy for a period of time, if both partners are just working to respond to the disability, if they're trying to survive, right or thrive in this space or adjust truly. So we want to look at that we want to look at how has their intimacy changed? And again, I think for listeners, I'm sure they've heard they know this, and they've heard this but like, what kinds of intimacy would they engage in before their their disability? And what does it look like now, some other things we know this right? We know that diet relationships, folks in relationship often don't like to talk about sex in general. They don't like they don't know how to we live in depending on where they are their backgrounds, they may come from a background that it was abstinence focus, or whatever the case may be. So sex was something that was not allowed to be discussed or not, or people weren't given language to discuss it. So we want to know that these couples or these relationships also deal with that. And we're adding an extra layer. Think about this. We live in enable a society so talking about disabilities hard, talking about disabilities, uncomfortable. For some folks, so add that to a relationship dynamic they may not want, they may not know how to talk about it. So it's up to us to kind of bridge that and make space to talk about it. And sometimes, depending on the situation, they may not be ready to, and know that that's okay. Right. But that eventually may come up in the work that you're doing with these couples, or relationships.
Absolutely. So it sounds like there are quite a few different challenges that inter abled partners may face and that they that those are similar challenges that individuals might face with regardless of the presenting concern, and some of that is just being able to name the challenges name disability, where it lives, talking about issues, whether it is sex, sexuality, intimacy, and then doing what feels difficult instead of what feels more natural and comfortable in pushing up against those internalized to belief systems of how things are supposed to be or how I am supposed to be.
Yes. Oh, yes. And yes, and it makes me think of when we, when we talk about just, you know, their role within their sex, sexuality and intimacy, when we think about those pieces before the disability, what was your role in that? Right? You know, they engage with each other. And depending on what how they engage, or kind of the experiences that they will have together? How much of that has changed? And because we know this, depending on the type of relationship, they may have had a sense that I have to be the one that engages or I have to I'm, I am the one that does this, when we engage in sex or sexuality, intimacy, all those pieces. And when that has shifted, you know, what does that look like? Right? What if I can't, I'm thinking of, of folks who may have who may have a penis, right? What if I can't maintain an erection anymore? Because of because of an acquired disability? What if that is impacted that? What does that mean? Right? And I'm thinking about I worked with a woman once and she had vaginismus. But the thing about her vaginismus was it was also taking her stroke where it was like a both it was a it was this, it was this interesting process where she had, she was dealing with that, but also half of her body was numb and tight, right muscles were tight, due to the stroke. So it was painful, and also uncomfortable. And also, there are some of it that you would not be able to regain, or at the time in her recovery in the in that rehab setting. So how do we explore that with the other partner? Right? The non disabled partner? And how do we make conversations around that where it becomes less, you know, I'm pointing my finger less like it's your fault. Or we can do this because of you anything, and it's more collaborative of what can we do? And what what is new, what can we explore, that's new, that's different. And a lot of that, again, may fall on us to broach those conversations and make space for them. Because Change is hard when they're dealing with constant change. You have to consider this too, when it comes to your income and finances. Oftentimes, that's impacted as well, there may be navigating new systems of care that they may have not experienced before, multiple doctors, multiple medications, multiple appointments, maybe surgeries, all these all these layers that may just be impacting the relationship dynamics, natural, quote, unquote, natural flow of one day, what it used to look like, and they have a new flow, right? There's this new experience, and how are we making? How are we accommodating and incorporating that into their day to day,
I love that. And it sounds like a really wonderful opportunity to kind of celebrate this opportunity to be strength based with our clients and say, how do we find this new exciting way to experience our bodies and experience one another in a sexual way that we didn't do before? Like, how do we make this our own little choose our own adventure? And it's not you versus me, it's you and me together alongside one another, as we overcome this disability?
Yes. Oh, and the part to this to that adds a layer when we talk about depending on the person's identities. Again, when we talk about intersecting identities when it comes to this experience, if we're talking about someone who may have these internalized messages about body image, right, and how bodies should look and how the body should be exposed, show up right in spaces in relationships. If If changes occur due to an acquired disability if I'm if I'm thinking about folks who may have additional scars due to surgeries, or may have bodies may just shift and change due to the due to that. How are we exploring that in a healthy way in a way where we get to open and talk about it because the thing that that we that some folks may not again, we want to there's so much that we do that. So poured in as counselors. But we want to make space for that we don't want to ignore that, because there's so much stigma around body image and around folks around people with disabilities and how when we add those two together, and then add gender identity as well. And when we add those together, it creates some for many folks internal internalized harmful messages about body, and about the way that they're showing up in their relationship. And are we helping them explore that maybe in an individual, but also relationship basis, and helping them really connect on a different level with themselves, but also with their partner partners. There was something that came from an from an article, I'll give you the name of it, I came through, I believe, what's the I can't remember the date, maybe 2015. Where they, they looked at body mapping as a technique to be utilized within when you're doing like sex based work, or sex therapy work with, with dyad, or just individuals as well, where they stare in front of a mirror, and they're, they're naked, and they're starting to map out their body, they're starting to pay attention to all the pieces of parts of themselves, whether it's changed or not. And the parts that have changed, making space, kind of being very, very, it's almost like a mindfulness practice, honestly, of really connecting with yourself, and how that can begin to just put you in a space where you have to engage with your own experience, right? What are your thoughts? What are your feelings around? As you look at this part of your body? What's coming up for you? As you're looking at this? What's coming up for you? What are you experiencing? How are you what, how are you sitting with that, and bringing that back to be come up with a good process in therapy, to be had to be had and also a non sensual touch exploration. So we do want to help relationships either either two or more partners, we do want to help bridge some of these gaps, I will say, and maybe their experience that they may not have done prior to, and now they get to, right, everyone gets to we all get to do this. But really working to that, I think the way it was described and the way that I've I've utilized and practices, they do it in the shower. So we want sensory as well to be part of this in terms of hot, cold, warm those kinds of experiences, but you want them to be naked, you want them to be in the shower, and you want them to be exploring each other in a non that does not have to lead to sex, right? We tell them that clearly. It's fine. You know, folks get rauzan you know, that may happen naturally. But we want them to start exploring each other in a way that doesn't force them to. to go further, right? It's a step by step process, especially if bodies have changed if they if functions have changed. We want we just we want it to be where we're getting to re experience each other in a new way.
Yes, yes to all of that. And I just I have so many thoughts running through my mind. And I just am imagining how powerful these, you know, sensative focus appetizers are where people learn to decouple physical touch and intimacy from sex. And we know that, you know, goal oriented, orgasm driven sex is a huge predictor in sexual dysfunction and disconnect. So how do we teach people to just enjoy being in the presence of their partner enjoying the sensuality and the intimacy and a touch of their partner in a way that's decoupled from expectations of leading to sex? Yes. And then the other thought that comes to mind was, was about that body mapping. And I really love how you described it. And in thinking about a client that I had once worked with many years ago, who acquired a disability and was using a wheelchair. And as similar exercise they had done that was so powerful, there was a lot of internalized resentment about having to use a wheelchair, a lot of anger at their legs, and not being able to use them in the same way that they had previously used them. And so this person looked into the mirror and thought to themselves, well, yes, you know, I am angry at my legs and angry that I can't use my legs are not functioning with it, I would like them to, and yet, they walk me down the aisle on my wedding day, which was the most beautiful day of my life. And so there is value in them, and I do have a love for them. And I am now in this place where I get to learn to love them again, and how wonderful and exciting that is. And on some days it's not and some days It feels really crummy, and that's okay, too. Yeah. So it sounds like a couple of those common myths or stereotypes about disability. At inter cable partners is that perhaps disability is easy to talk about, we know that that's not the case, or that topics around sexuality are easy to talk about. And that's not the case. Or that people can naturally organically fall into a caregiving space or be able to negotiate roles as a caregiver, and then as a lover or as a partner right away. And we know that's not the case. What are some other myths or stereotypes about disability or inter abled partners that come up for you in your practice? Or maybe that you've even seen in research?
Yes. Oh, all of those Yes. And more. Gosh, there's so many. And, you know, it's interesting. So, you, you brought up a case example. So I'm gonna kind of tag along on that, where we know this is both there's a great book where I'll provide a resource. It's called disability visible visibility first person stories from the 21st century by Alice Wong and that book is just wonderful because it's it's a it's a group of folks is to save shoes, labels a disabled voices, that are able to speak to their experience without anyone trying to, you know, filter read, modified accept, or whatever, they may change it to, to feel, quote, unquote, more comfortable. There, she, she lays it out. And what I love about the book is, and also frustrating, right, because this happens on a day to day basis for many folks, is the sense of speaking to relationships, where if a person is using some kind of device, some kind of mobility device or mobility aid, that if they're, if they're with a partner, that folks will often address the partner, but not them. Because somehow they, I don't know, they internalize piece of like, Oh, I don't know how to engage with this person with the disability. So I'm going to just turn to the person who, quote unquote, looks, I hate the word normal, I'm going to use it for this context, quote, unquote, right? So they lock eyes with them, they talk to them and completely annoy, annoy, avoid the partner with a disability, and how there's, oh, it's interesting, because this happens often, especially so I, again, we have background so often looked at vocational side as well, where the mere, the mere piece of a wheelchair, just the wheelchair itself automatically adds a layer of, well, your big concerns around cognition, when maybe you also have a cognitive disability, when that might not be the case at all. But it's an inherent assumption because of our stable a society that adds these complexities to just social engagements. Also, employment also just in general, there's, there's layers of pieces. And the other part to this is in this is an this I would say, maybe maybe a mythical come from this is when we considered space spaces, our environment, our environment is very disabling our environment is very limiting. I live in Colorado, and my goodness, there are areas where there's 50 steps just to get to one house, honestly. And how inaccessible that is, for many folks. And just I was exploring some offices, around some counseling offices, and just the the lack of access is a little unbearable, and upsetting in many ways. And I think just something that comes to mind is to remember, when someone acquires a disability or in general, maybe we're born with the display has had it the whole life, etc. There's additional layers and steps that they have to experience on the day to day basis, they have to consider if I'm going to this place, let's say it's a let's say to work group, we're going to go to happy hour afterwards. Well, where are we going to get the name? They have to do additional research? Is this even accessible? Can I enter this space? Is there going to be insight? Is there a space where I can either situate myself to be comfortable to be present to be engaged? And what does that look like? And how often do we not take those things into consideration. And so all those layers even when they want to seek out mental health services, this was also an additional layer of how we can be responsive to in general, just I would say it's a, a universal practice that we can all engage in is when we I know many of you may be on insurance panels may be engaging in those kinds of system. They ask you, is your space accessible? They have questions that they may ask do you have a ramp is there an elevator etc. Outside of that, you may put that on your website. And how much more detailed do you provide? Do you provide the width of the doorways do you provide How many steps there are in general around your building? are you providing is your space adjustable? Your office space, some spaces are very, like, you know, there's not a lot of space to move things. Some folks like to cram their offices and make a little queue, right. But it also creates some excess inaccessibility. If I'm thinking about folks who sensory
me means are we considering light options? Do we provide that as an alternative as an option on our website of, you know, options for lighting options for furniture, removal, or replacement, or whatever the case is, we often don't explicitly make these things known. And so we're leaving them to have to do more work to figure out Are you someone who can serve me outside of what your areas of knowledge and experiences and but just your space? Is this a space that can even go?
You, you just blew my entire mind? Like all of my mind is blown right now, I never thought about even just the width of the doorway and lighting options. And so those are some really powerful examples of best practices. What are some other ones you can think of when it comes to best practices to support inter abled partners within relationship settings? Family settings, mental health settings?
Yes, yes, all of that. So all of those pieces, I would say everybody should go start measuring their doorways, start putting this on your website, make it very clear, help people find you, and know that when they go to you that you are going to be responsive with their needs. And other best practices. Let's see, there's so many Let's see some potential. Obviously, in your paperwork, it's so important to examine that not and we should, we should all be looking at our paperwork. I think outside of folks with disabilities. In general, just being more inclusive with our paperwork, the thing to remember is, we have we operate within an interesting space of we have a very, for many folks, they have a very medicalised narrative training experience. So they're looking at, at many aspects of a person through a medical model, right? And we want to know, that doesn't necessarily translate well, when we're trying to serve folks with disabilities, that is very much pathologizing, the idea that they're broken or not, quote, unquote, normal, all of those pieces. So we want to be mindful of the language that we are even using to, to, to engage, right. And also on our paperwork, what are we asking explicitly? Now, I may even, I do recommend adding questions to your paperwork that may be disability related, where it may ask explicitly, we might have something that says, you know, do do do you identify as having a disability? Yes, blank, what is it right? Maybe we need to be a little more explicit, what are your needs in a therapeutic setting? What might be something that would make you feel more comfortable in this space? Now, you can also ask that yourself. Great, do that. And we want to know, we want to know, and have a discussion around best fit? Is this space conducive to what you need? And what can you do to advocate or accommodate the potential client that you're trying to serve? And the important thing here and I think we get stuck with this, because when I often post the question in trainings or teaching or whatever, have, when you hear the word disability, what image comes to mind, and the majority of folks will tell me a visible disability comes to mind they will see an image of either a wheelchair or a cane, Walker, something visible, that tells you quote, the person is different. And so we need a complicate that because there are so many disabilities that are not visible. We We We are so good at making assumptions about everything. And it's like it's one of those best practices of we let's remain curious. How about we ask about we make space to explore? Right? Because it we again, it's interesting, we we continue to perpetuate this ablest ideals, and practices, even in our work without even knowing we're doing it. And just being mindful of what if I just asked and made space to explore differences? What if I broached in the first session, and, and made space to figure out are there identities within the client that we may not see that they might want to share? and offer that can be for them, knowing that you might be someone different than everyone else out there who views them as someone who can? Who is able to access all the things around them, when in reality, there might be things that might not that might not be accessible, that might not be, you know, in line with what they're needing? Wow.
So what I'm hearing you say is how important it is to create space and places for folks to be who they are, and to advocate for what our clients need rather than having them tell us we take ownership we take initiative and say not just do you need support, but what support Do you need, am I the right fit for you to get those needs? meant,
yeah. And how humbling that is, I think sometimes, again, I'm going to I have had enough experiences with therapists in the community to speak to this map generalizing. But, and to thumb, it might be that we somehow get in our heads, that, you know, every time that comes away, we're going to help them and that's it, we're going to do our best. It's important that Well, yes, you can. And also, are you are you doing things from a responsive space where your ego or your own stuff is getting in the way of doing what's best for the client or clients that you're trying to serve. And the other best practice I'm going to recommend is, you we are there's so much work that we need to do that we don't do it, the self of the therapist is essential to doing quality work. My goodness, I have chills in my body because this is so it's so upsetting, and and yet exciting, and yet there's space for it. And yet we don't do it. In many in many cases. Where there, the PISA, another piece that came from my dissertation was this around self of the therapist, and the need to explore what what am I holding on to around folks with disabilities? I don't care if you've seen a client with a disability or not, you should still explore this because how are you contributing to this ablest mindset this ablest ideals in our society? Stay with it, right? How am I contributing to this? Or how am I upholding these practices? So being able to sit with yourself examine Where do you get where did we get these messages, right? of them being different than being not normal? them being different, or you know, all those pieces? And there's a lot of that has to do with our early upbringing and within our social context. So if we consider what if I have seen this myself, I know it has been shared before and identified as, as something that can be harmful is where children may be curious around seeing someone with a disability, they may point or they might ask questions. And the caregiver, often caregiver parent, you know, whoever is maybe with them, maybe like, No, no, no, we don't, don't ask, don't point. And we stopped their curiosity in that moment, furthering signaling that something is wrong or different. We want to encourage that curiosity, right, we want to explain to them there are people who may who may look different from us, and they, they're just like us, there are people too, right? They're navigating the world a little differently. And a lot of that ends up stopping because we are super uncomfortable with it, because we somehow silo them and I want you to consider two educational settings. What have you been exposed to? I know for me, in my K through 12 experiences, folks with disabilities were often I would say more visible disabilities. Because you know, for for non visible disabilities, I wouldn't necessarily know around me. They were separated, right? They were either in special education or other forms of class settings outside of mainstream classrooms. So again, what messages are you internalizing from that? are you engaging? Do you have friends who are who growing up that had a disability, and what were the kind of conversations around there? This happens so much, and it's very upsetting. And then it, this is, I'm going to recommend this book as as well. It's called in sickness and in health, love disability and a quest to understand the perils and pleasures of inner abled romance. And that's by Ben Matlin. And he gathered a bunch of stories, he was born with a disability himself, but he gathered a bunch of nd gather a bunch of stories from relationship enabled relationships. And the the narrative that often also gets communicated is if a non disabled person decides to disable the date. And then the person happens to have a disability, the messages communicated within family are so harmful and complicated. So it's important that when we talk about what messages are we sitting with, we have to explore them, you know, are we how are we comfortable? Are we comfortable with that even the word disability at a participant in my study say that they didn't like the word disability? Because it was deficit in itself? It was a deficit in itself? Well, you would view that if that was your if that's how you're contextualizing disability in our society. We know it's an we're in a balanced society. So yes, it's going to the word disability, many folks are going to try to, you know, move away from and so yes, I think there's so much that we can do and sit with ourselves. Before we before we do more. We have to start with us. Hmm.
Well, I'm so glad you mentioned the dating part. Because I find that when I what I am speaking with folks who are disabled, and their dating, some of those myths and stereotypes that come up are around the hypersexuality or asexuality of disabled folks. Yes. Is that something you've seen as well, either in your research or in your clinical work? And can I just tell you how frustrating it is that we don't yet have sex toys that honor the like manual dexterity, or challenges of folks who either have a difficult time with grip strength, or, you know, flexing or different things like that. And I recently just saw one sex toy for penis owners, that is really incredible, and is able to help folks achieve an orgasm without an erection. And I can link that as well to the landing page. But I'm curious to hear your thoughts on that.
Yes, oh, so many problems there, right. And so many, so many problems around those pieces have just one access to other forms of pleasure. And it's, again, when we consider examples. I grew up in Texas, and it was very abstinence based. I didn't really do Sex Ed, I don't know, I didn't know what sex was. Now, I'm just kidding. I, you know, I didn't really understand all those pieces. And as a gay man, I was like, much less even. I knew nothing. It was into my mid 20s, where I was like, Okay, I know a little bit more, and I'm still learning, right? And it's, and it's our society, psyches view around sexuality, and related to different folks. So I'm thinking about just like, our queer folks with disabilities, and how they get inundated with information around sexuality, sex, and pleasure, all of those pieces, and they don't that's the piece is they don't, and it's frustrating, because a lot of our programs don't even provide examples or resources for what does it look like? If you have a disability? Right? What does this look like, if you want to engage in pleasure? And, and you know, are there different ways are there and just the images consider the the length, not only the language that's used, you know, case examples are being yet so whatever you want to call them, but also images, and they're often not depicted as having a disability. So who are they who is being reflected in those in those experiences, right. And they're mainly white folks. So we want to know that there's limitations to that. So again, when we're looking at, if we're working with enabled relationships, we want to explore their, their their pieces of understanding that, how did you learn about tax? or What does sex look like to you? What does it mean to you? Right, or pleasure? You know, all we want to understand those pieces, and I'll be scared of them. The common thing I will say this, and I'll go back is, I hear a lot of couples therapist or relationship therapist say, Well, I'm not a sex therapist. Well, you don't have to be get trained in sex therapy, do a training, do something, understand that they're integrated? Oh, my goodness, that's not an excuse. That's late. I don't want to say that pleasing. It's Excuse me. But that's an excuse. You have work to do. We all have work to do. We people are paying us money to come and get support. And for us to be like, nobody do not okay. The other piece of that is yes. The other part is when we're talking about pleasure, and we are providing folks resources to get to go look and explore things, we need to know that if I'm going to send someone somewhere, I need to do my research. First, do they have any adaptable, or disability risks responsive or sensitive toys that are applicable or applied to them? If I'm going to send someone somewhere, and they find things that don't fit them, in terms of something that they can even utilize? What is that communicating to them with harmful? So we want to do our work, we have so much work to do ourselves. And it's not a bad thing. My goodness, that's part of lifelong learners. We're not when we never arrive, we're constantly learning and engaging in something that you mentioned that's so important is there's still there's still there's so many limitations and lack of resources and opportunities. And there's it just speaks to the what isn't left to do around this.
I'm so glad you mentioned that just because people don't identify as a sex therapist that they can't work with sexuality based issues in counseling. That is like one of my things that I hope we can begin to deconstruct as counselor educators. And you know, it sounds like the work you do touches on these three pieces that I I firmly believe. If we can get really, if we can commit to continuing to learn more about these three topics. We can work with just about any client that is attachment, trauma, and sex. Yes, like those are the things right like when I think about all my clients, those are the things that continue to come up regardless of who you are, where you're from, what your experiences are. None of us escape, adolescence or adult life without trauma. All of us have attachment issues. Thanks family of origin and all of us continue to struggle with The fact that good sex is our birthright, and we are deserving of pleasure, intimacy and love and kindness. And yet so many barriers exist to keep us from achieving true actualization around one or more of those areas. So I love hearing about your work with attachment and love hearing about your work with sexuality and support enabled couples. And I know you've mentioned quite a few resources already, but are there other ones that come to mind? I'll make sure to link all of these as well on the landing page, what are some of the best resources or even just your favorite ones that come to mind when you think about how to prepare counselors to work with international partners or clients with disabilities?
Yeah, so there's a few those two books are generally are two of my favorites, as again, and I speak, I am speaking to you as a non disabled person. So I am mindful of my positionality in my work, and it is so important, I'm constantly engaging in that because I can't evade that it's a reality. Right. And so these two resources are coming from disabled voices, it's so important that we are, we are making space to click in here and listen to disabled voices. So these two books are to me foundational in just engaging with the realities of what may be, quote, unquote, unspoken. Um, there are a few podcasts that that I really like one of them is called disability after dark, shining a bright light on disability stories. So, so important. So that is a great one to engage in. And the other one is by Alice Wong, herself, who wrote the dissent, who wrote who gathered and published the Disability Visibility book. And it's called Disability Visibility. And it is available it's it's around politics, culture, and media. So that's another one to engage in. And that's just a way to sit, sit with explore, listen to voices, hear them, right? What are they saying? How am I contributing or upholding these practices or beliefs? Because guess what we all do? We can't we're not free from it, whether we've explored it or not, it's, it's, it's a reality. And we can't we just we, we can't keep, we can keep doing the status quo. We really can't. It's so harmful. There are 26 people 2626 26% of Americans identify as having a disability, and that comes from the CDC. So that's a that's a large group of folks in our community. The idea if you're if you say, if you're hearing this, and you're saying, Well, I don't work with anyone with a disability lives, I'm gonna tell you. Right, they may not have shared it. And it's important when we don't broach from the beginning, they may not know this is a space to talk about it. I had there have been so many harmful therapists out there. And yes, harmful therapist, you are out there, where there have been moments where there was a great presentation I attended at ACA, the American counseling Association, in New Orleans, this or excuse in Atlanta, dismissive in 2018. where there were stories being shared, and one of them was around, there were all therapists related in terms of therapists responses to clients with disabilities, and there was a client who was traveling abroad, and they had a physical disability. And the therapists looked at them and said, Well, how are you going to do that? Right? Isn't that interesting, there is much more harmful messages that are communicated much more questioning, then you would multiple questioning out of your own lack of knowledge and awareness. So it's important that being curious, and open is different than you being not, you're not doing your own work outside. Similar. When we talk about other clients with identities, you have to do your own homework, don't put it on the client to do it for you. It is important to remain curious to understand their lived experience and to understand how that ties to their overall presenting concerns or issues or whatnot. And it is not their job to teach you about disability. I couldn't live you're doing that right now. Stop your resources, use them, please.
I love those resources. And yes, there is so much space for counselors and therapists to do our own work, otherwise, we are going to be hurting the people who are looking to us for care. And you know, if you're listening to this, and you're a counselor that I'm sure you yourself, have heard stories of clients who, you know have come to you after other counselors who said some really harmful things or who have expected clients to teach them about what it means to be, you know, X, Y, or Z. So a couple examples that Dr. Bobby fuseli has described to increase our competency to work with enabled partners include through those fantastic podcasts, there are quite a few books, but also just to be curious and to continue doing the work to learn about cultural competence and all of its forms and all of its identities.
And, and for my cancer educators out there, let me tell you, so I reviewed force then accreditation bodies, social work, psychology, clinical mental health. And it is it is important that you hear this, our standards, Kate, I know we're going to get kicked for those of you and kick her programs like myself, yes, standards will be coming out the current ones that are listed, what outside in non rehabilitation counseling programs, the disability content that's covered in most programs is airy. In terms of how it's not covered, it might be covered in a chapter in one week. And of course, we need to be incorporating all of we need to be incorporating disability in everything we do. It's so it's so bananas when we think about it, because we often talk about multicultural competence. Often the folks that are left out are those with disabilities. In those conversations now, it is so important we consider race Yes, it's so important we consider gender Yes, its own party, we consider all those pieces and how we are considering disability in that equation. And on top of that, there are so many wonderful books that are nicely paired to the other textbooks you may be using. For example, in my human growth class, we have a standard book that has been used for teaching folks about human growth and development and limiting as hell when it comes to talking about disability. So I added a textbook, it's from Julie smart, and it's disability across the lifespan. wonderful addition, because it covers the gaps that aren't covered in that book. You can do this, you can do this articles, you can do so many ways. If you are uncomfortable talking about it, figure it out, because you're an educator, you need to do something on me, I'm happy to come to your class and talk about this, you know, we can't evade it. We just because we don't have the experience doesn't mean we get the opportunity to evade that topic around disability. Yes, it is. It happens regardless of if it is an acquired or someone who was born with or someone who will make an agent community, it will happen we need to get comfortable with it. We need to get into a space of understanding, right and exploration and also unlearning and relearning practice ablest practices, and more responsive practices for disability folks.
Oh my goodness, I am holding all of you listeners accountable. Counselor educators, you are being held accountable. This is our journey. This is our role. This is our work. And we have been positioned with this incredible opportunity to educate people, future counselors and to support clients who are working through this navigating this lived experience every day. So what are you doing today that's empowering you to be your best self tomorrow? Are there other pieces of advice for our listeners? I know you've left us with quite a lot of Nuggets to think about enroll around in. But are there other final thoughts that you have rolling around in your own mind?
Yes. Always right. When it comes to this topic, I'm so passionate about it, about serving this community. The thing I would recommend is a reality for many folks, you know, when if you're coupled if you're in a relationship and have one or more partners, the question we rarely talk to each other about is you know what would happen if something if something changed with us like if my body changed if my function if my daily functions changed, you know, how would we respond to this and it's one of those things where younger couples and middle life middle aged couples You know, when I'm looking at my books in my 20s, our relationships, our relationships, people in their 20s people in the 30s we it's again it's seen as like it can't happen to me and if similarly when we think about death or whatnot, it's one of those things where we avoid at all costs. But related to disability, it's a reality right? It can happen and it can happen at any time and it's not up you know and how are we going to respond to that in relationship and I think that can be a nice foundational question that you can you can start exploring yourself and and really having a dialogue around it so that way you can figure out Oh wow, there's so much that we didn't necessarily know or think about of how might we respond to this if you have children if you have pets right all your all your loved ones how are we respond? How can we respond and support each other what things might to be able to consider in terms of having you know, other forms of insurance like long term short term disability, those kinds of pieces that might support financial changes if it occurs, and as well as access if you have access to I guess the other disparity part right for some Folks, but if you have access to health care, what does that look like? Would you get provided an aide someone to provide care for you that can live some of the responsibilities for maybe a partner that may take those on, that might provide some ability for you for the dynamic of relationship to continue or adjust and in a different way. So you want to be considering those things. I want you to be curious with yourself, please and be curious with clients. But I think that's a that's just a nice way to just start
talking to your partner partners about it. Definitely some good pieces of advice for our listeners, and how can listeners get in touch with you if they want to learn more or get in contact? Yes, so you can reach me at my email. I'm at the University of Colorado, Colorado Springs in the counseling and Human Services Department. My email is firstname.lastname@example.org
He has an paul i A f as in Frank email@example.com. And yeah, I'm happy to if you email me, I'm always quick to respond. So happy to engage.
Wonderful. Well, this has been an absolutely illuminating conversation. Thank you so much for joining us on the thoughtful pot thoughtful counselor podcast. And I look forward to speaking with you again soon. Thank you.
The Thoughtful Counselor is Desa Daniel, Raissa Miller, Aaron Smith, Jessica Tyler, Stacey Diane Aranez Litam and me, Megan Speciale. Find us online at thethoughtfulcounselor.com. Our funding is provided by Palo Alto University's Division of Continuing and Professional Studies. Learn more about them at concept.paloaltou.edu. The views and opinions expressed on The Thoughtful Counselor are those of the individual authors and contributors and don't necessarily represent the views of other authors and contributors nor of our sponsor, Palo Alto University. So if you have an idea for an episode, general feedback about the podcast, or just want to reach out to us, please drop us a line at firstname.lastname@example.org Thanks for tuning in and we hope to hear from you soon.