Episode Transcript
[00:00:00] Speaker A: Into the Fold is part of the Texas Podcast Network, the Conversations
Changing the World brought to you by the University of Texas at Austin. The opinions expressed
in this podcast represent the views of the hosts and guests and not of the University of Texas at
Austin.
[00:00:20] Speaker B: So I've been in studies that felt very respectful and I've been in studies
that did not feel that way. And the emotional difference is big.
When people feel included, their stress can go down, their need to mask can go down, and trust
tends to go up. And that can be part of community healing.
[00:00:44] Speaker A: When we talk about healing, it's easy to picture something individual,
whether it's therapy, medication or meditation.
But in reality, healing is also collective. It happens in communities, in movements, and in the
everyday work of building systems that care for everyone. All across Texas, people are showing
that you don't have to wait for change from the top down, that you can build it from the ground
up. And when local efforts succeed, they don't just transform a workplace, a neighborhood, a
classroom.
They offer a template for reimagining the system itself. Hey y'. All. Welcome to into the Fold, the
Mental health Podcast. I'm Mike Evans and I'm glad to have you with us as we continue our
season long exploration of growing capacity for change.
This episode is part two of our community arc.
Over these three episodes we're looking at community based solutions for mental health and
well being that that elevate local voices, lived experience and finding those areas where the local
and practical meets the systemic and abstract for today.
Let community drive the work.
Larissa Minner, an expert on disability research and universal design, joins us for an exploration
of how small scale changes to everyday practice can catalyze deeper change, not only to lives,
but to systems.
Larissa Minner is a researcher at the.
[00:02:25] Speaker C: Texas center for Disability Studies and director.
[00:02:29] Speaker A: Of the Weaving Inclusion Together in Research.
[00:02:31] Speaker C: Hub or with Larissa specializes in disability.
[00:02:37] Speaker A: Research, universal design, neuroaffirming environments and
accessibility.
She has helped create advisory structures where autistic adults and people with intellectual and
developmental disabilities shape research, training and practice.
And she herself is also autistic.
[00:02:57] Speaker C: Larissa, thank you so much for being with us today.
[00:03:02] Speaker B: Thank you for having me here.
[00:03:05] Speaker C: Larissa, your work with the width and that's just how I'll refer to it.
The WITH advisory group and with disability.
[00:03:16] Speaker A: Research more broadly demonstrates that research can be a community
process and not just an academic one.
[00:03:26] Speaker C: So can you talk about why it.
[00:03:28] Speaker A: Is so important for communities, and especially disabled communities, to
be meaningfully involved in research that affects them?
[00:03:40] Speaker B: Yes. So for me Research that is inclusive for disability is also about
healing.
Research affects huge parts of our lives. Healthcare, education, services, support.
But disabled people haven't always been involved in shaping it and they're still massive room for
improvement there.
And that can take a toll on people's mental health, especially if they've spent years feeling
misunderstood or spoken about in a negative way.
And I say that both as a neurodivergent researcher and as someone who has been a study
participant. So I've been in studies that felt very respectful and and I've been in studies that did
not feel that way.
And the emotional difference is big.
When people feel included, their stress can go down, their need to mask can go down, and trust
tends to go up. And that can be part of community healing.
Involvement also changes how we understand results.
For example, several studies showed autistic people often make the same moral choice whether
someone is watching or not.
And for a long time that was described as researchers as being too rigid.
And autistic scholars pointed out it can reflect a strong internal sense of right and wrong. So the
data did not change, but the interpretation changed because autistic people were at the table.
And as an autistic individual, that is in itself was very validating to read because we are so used
to hearing about deficits. And that goes with different disabilities as well.
I'm multiply disabled myself.
Participation also means being added onto.
It doesn't mean being added onto a plan that someone else has made when we look at true
participation.
So for me, when I think about participation, it just means you're added onto a plan someone else
made. But if we're looking at co design, which ideally we would automatically include when we
think of true participation.
Co design means shaping the questions and wording the materials, the excess needs and how
the results are used right from the start, and making sure that the study is meaningful to the
participants themselves.
Which is why with Weaving Inclusion Together, Research Hub is built around that idea and it
was built around the disability concept. Nothing about us without us.
So we pay disabled advisors. In particular, adults that identify as having intellectual and
developmental disabilities, including autism and family members are those that identify as both
to give feedback every step of the way of research. They can also help build accessible
materials and make sure that the research itself is a disability inclusive and relevant.
With has changed how we design projects at our center Texas center for Disability Studies and
also how people feel during the process.
WITH has been around for, I think it's been about two years now and we're honestly still learning
it's ongoing always learning process, I would say with any new program.
So for wif, near the beginning, we wanted to make sure that the people that our WITH members
were included in what WITH would look like.
So near the beginning, once we already had done the recruitment, we had different sessions
where we were discussing ground rules about how we make it a safe space.
So we did have discussion like things like camera off should be optional. People can
communicate in different ways.
We also talked about schedule flexibility. So that's partially why we have different meetings. So
one month will be one in the evening and the other month is during the day.
And that was actually because we did incorporate the feedback from members.
That type of schedule flexibility helps me get more inclusive. We also talked about ways to make
it more accessible. We always ask that people need changes in order to fully participate.
People can also give feedback later on.
Near the beginning, there was a tool that I created to help researchers present for wf. And
before we ever actually use that, we sought feedback from the WIF members themselves
because we wanted them to see what we plan to actually show to researchers that impacts
them. So they gave us feedback that we incorporated. They also suggested other ideas, such as
some of the members wanted a feedback tool that they could fill out optional for themselves. So
we actually, we did create that using that feedback in mind. And the guide for researchers that I
mentioned, I would like to say it's been updated multiple times, even recently taking feedback
from WEFT members and from researchers. It's been an ongoing process.
We update trainings along the way for WEF members and we also make sure that everyone has
certain research basics.
So we are often creating training that is accessible for people with different needs.
[00:09:59] Speaker C: Okay, so Larissa, lingering for just a minute on that one keyword, CO
design and what you just said gave our listeners a sense of what it looks like when when
meetings and environments are designed so that people of different neurotypes can participate
fully.
Do you ever experience that there's any tension between the co design model and whatever
your productive agenda might be, the work that you are trying to accomplish in your experience,
how do people manage to navigate that?
[00:10:44] Speaker B: We have experienced that. And again, I would say it's been an ongoing
learning process.
For instance, during some of the training sessions, I have talked to with members about some of
the things that we are trying to do while also getting their viewpoints.
Sometimes there has been a disconnect, for lack of better words, between what researchers
focus when they're presenting, maybe, and what the lift members may prioritize.
Sometimes it has included both, I would say educating the lift members as well as the
researchers like both have been absolutely essential, as well as being making sure that things
are facilitated in a way where both groups are working together instead of separately.
[00:11:47] Speaker C: And I want to pull at the thread of.
Just because it's striking how much of this is about dignity and sort of not, not forcing people to
fit the space, but shaping the space so that people can be themselves.
And one question that comes to mind is just for you personally, are there any concrete examples
of ways that other people's willingness to shape the space so that you can show up more fully?
Any personal examples first of that being done and then making a real impact for you?
[00:12:45] Speaker B: Yes.
Trying to think of a concrete example.
I would say one of the this is pretty simple and it should be best practice in my opinion is this
small difference when someone simply ask me ahead of something like what changes or is there
anything they can do for me that will help me participate fully? That in itself can open up where I
might feel safer saying my needs.
When people normalize certain things like stimming or cameras off camera or taking breaks that
I know these things seem small, but they're not often normalized the way that I think they can
be.
When people talk about like executive function supports, that has helped.
That in particular has helped me when I've been on projects where so I've been a speaker
before and I can give a more concrete example real quick.
One of the most inclusive experiences for me was a place that they really collaborated with us
before the speaking events and they talked to us. And one of the things that we wanted and
most of us were autistic was we wanted a prep call and we also wanted a debrief call because
having a debrief call afterwards can really help with anxiety and also to go over like other steps
that we may need to do that I have not seen implemented too much.
They also made it really easy to get accommodations during the actual speaking event.
And that made me feel like I could be myself. And I felt comfortable simming and I also felt
comfortable, I guess, just being my authentic self more than I normally would be.
[00:14:57] Speaker C: And so one of the kind of, I guess the broad themes of your work is that
disability community driven practices can be part of a larger kind of systemic push toward a
more human centered approach to either like research design or how it is that people interface
with healthcare and health delivery mechanisms. I'm really curious about, you know, what are
some ways that just some of the things that you've been researching, you know, these, if we can
call them disability community driven practices are starting to influence institutions, policies or
the broader field.
[00:15:49] Speaker B: That is something that, if I'm going to be honest, if we're looking at
different institutions, there's definitely improvement. But not everyone is incorporating even
community feedback in certain processes and they're not right if we're going to daily life.
It's known and studies show this, whether it's health care, mental health, there's still
professionals that aren't trained in disability or neurodivergence and they don't.
But many do want to learn more. So that's something that we actually are working on. At our
center that we did relatively recently we hosted a training for therapists in Texas.
I was also involved in that and that was part of our SOLVE study which is solution focused brief
therapy for autistic adult study specifically for young autistic adults. We did train therapists in
Texas on concepts like neuroaffirming care.
How do you take into consideration different processing and communication and action function
supports and practices? And I would say that the feedback was very positive. There was a lot of
therapists who wanted to be involved and before the training started they actually did have to
limit it to those who were licensed in Texas and be stricter because there was a lot of interest.
So to me that does suggest that, that for the most part there are providers that want to include
this in their daily practice, but they lack, they may still lack the resources to implement them.
For the research component, there are more studies that are looking into how to have more
inclusive research and that's something that researchers are still having to try to incorporate
themselves.
Something that is kind of lesser talked about is are there measures for research that are well
known and well validated but.
And sometimes these are validated on certain groups, including disability.
But then there are later on, like more recently there have been tools or measures that have been
created but they aren't as well validated.
And that can also cause kind of.
[00:18:36] Speaker A: A.
[00:18:38] Speaker B: Not, not tension, but almost like tension between the disabled community
and I would say researchers and those that are both.
And that is something that as researchers we also have to consider.
And I would say that the more studies that do implement measures that were developed with
lived experience feedback from different people with disabilities, that really helps. Taking that
step for our SOLVE study we implemented it was a, we didn't develop it, but there was a tool that
was based on a more well known depression measure and this particular one was created by
and for autistic Adults.
But it's a newer measure.
The more studies that take steps like this, the more it can become more common practice to
have considerations often also with research, people may not incorporate certain supports
because there are research considerations to make sure that there's a certain amount of rigor.
So normalizing these concepts can go a long way.
But it does take people publishing and speaking about it to see these changes.
[00:20:08] Speaker A: Okay.
[00:20:09] Speaker C: And so and one and one follow up to that that I have is so for those
listening who work in mental health, nonprofits, public systems, what are some practical first
steps?
And this is kind of a big question and you can slice off any one piece of it that you feel that you
can speak to.
What are some practical first steps that they can take to make their own work more inclusive and
more community guided?
[00:20:58] Speaker B: There are trainings that exist so they can also search for trainings that
could help with that. But the other aspect is you can also do your own literature review to see
what other people are doing out there. Kind of also finding talking to other providers could help.
Some people already have practices in place.
I have talked personally to wake providers where they already have steps in the intake process,
which I would also recommend when there are questions that everyone is asked, such as for
communication and sensory needs as well as executive function that can support anyone. And it
can also help not just those that are already identified are diagnosed, but a lot of people, as I'm
sure you're aware, are not even identified, especially if we're talking about neurodivergence.
And it can also help with other.
Some other things that can kind of mimic that as well.
So having the intake optimize and also kind of.
I would also add re looking at that later because sometimes people's needs change, especially
with things like life stress or other things that are going on. So that can help. And I would also
say talk to your clients.
I know that might seem obvious, but I feel like that's often not utilized enough.
And that's.
I would highly recommend like also incorporating like art is information being given in different
ways.
[00:23:06] Speaker C: Or like to. Yeah. Or to your point earlier about, you know, it can really be
sort of transformative when someone just, you know, takes the trouble to ask what it is that you
need.
[00:23:18] Speaker B: Right.
[00:23:19] Speaker C: Yeah.
So you're involved in a number of different, I guess, research oriented projects that are kind of
on the cutting edge of disability and accessibility.
And I'm just curious about what is on the horizon for you.
Any upcoming goals or project milestones that you would like for our listeners to.
[00:23:57] Speaker B: Be aware of a milestone is that we do hope that the self study and that's
the support of outcomes through listing validation and Harvard that's a focus group therapy
study we do hope to to end we're still recruiting at this time but we do hope to have this a second
pilot run close over the next few months. If I was going to give an estimate and then take that
information from our data and again this is a mixed method study so we'll have a quantitative
qualitative data to improve future runs.
The LUDE project which is run by also run by Dr. Sandy Pagania and I'm the coordinator not for
Solute. Sorry I'm the coordinator for solve for which SOLVE was one that has utilized community
feedback. So that's something I am really excited about and I would say a milestone is being
able to incorporate that and use it for approving education for therapists. I know we hope to
eventually depending on grant funding have future more train the trainer programs or Salud
which I am which I am on I did create a cassette in a sense support tool with scaffolding and
picture support. So people with IDD are excluded just because often like traditional consent
materials aren't accessible. And too often research we use cutoffs to exclude people.
So for me this has been a milestone.
You have like a structured tool that has different considerations and isn't used to exclude
someone but rather to decide if they need more like a dissent process versus consent and talk to
them about their needs.
I think that's essential.
Another milestone that's coming up is I was recently elected on the AUCD board of directors and
I'm the Cola Co chair which will start in January of 2026.
I'm probably leaving out a few other key zones. I would also say with Lyft in general has been a
keystone or it's been a major milestone that we're going to reach about two years soon.
[00:26:44] Speaker C: And just in general, anything that you want to promote that you haven't
already mentioned that our listeners could either learn more about or even take part in.
And if there are anything in the way of any resources out there just for people who want to learn
more about your work that you want to mention.
[00:27:18] Speaker B: If you go to our center website for the Texas center for Disability Studies
you can find several different projects including a few of these projects that I named today.
Some of them are recruiting at this time for different populations.
If you're a research if you're a researcher at UT doesn't necessarily need to be at the School of
social work, but the WIF group is we're currently looking for researchers who want to participate
that are UT affiliated, particularly those that would like to consider using the LIF in their future
grant proposals to get feedback that can shape different steps of their research project.
If that's something you're interested in, you can again check the TCDS website under Projects
and the WIF Group as well as the contact information and E Interest form are all included for
that or a couple of the other projects such as the SOLVE Study will be on there.
I don't think I mentioned the Power study, but that is still recruiting and necessity that I've been
on the team that also has been aiming to make sure that the research is accessible for myself. I
do have a website that's outside of like ET and I'm also on LinkedIn, so you could reach out to
me if you're interested and that I also do content creation and speaking and training, particularly
in areas related to universal design, accessibility and neurodivergence.
[00:29:20] Speaker C: Okay, what's that web address?
[00:29:24] Speaker B: My website.
[00:29:25] Speaker C: Yeah.
[00:29:26] Speaker B: Okay, it is believe it's laurasimoner.com yes, so just laurasimoner.com
okay.
[00:29:37] Speaker C: And Minner is spelled with two N's.
Well, okay, Larissa, that sounds like a lot. It sounds like you really have your hands full.
I think that for anyone who has, you know, just spent any amount of time wrestling with, you
know, issues of of neurodivergence or disability, inclusion and accessibility, there are a lot of
very exciting frontiers that I think that your work can be an important access point for those who
just want to just know a lot more about all of that. And so we really do appreciate you taking the
time to come onto the podcast today and good luck with it all.
[00:30:37] Speaker B: Thank you.
Glad that I was able to be here and I hope that more researchers and providers really consider
using different people's voices is very much needed.
[00:30:57] Speaker A: Before we wrap up, a quick reminder that this episode is part of our new
season theme, Growing Capacity for Change.
Across four community, partnership, policy and research, innovation and education.
We're exploring how people all across Texas are growing their capacity toward a better, more
lasting mental health land landscape.
If you haven't already, check out our previous episodes this season and follow along as we
continue to tell stories that connect and inspire.
And that does it for this episode. We're glad that you could join us. Production assistance by
Cheyenne Salazar, Kate Rooney and Daryl Wiggins and thanks as always to the Hogg
foundation for its support.
If you have comments or anything you would like to share about the podcast and feel free to
reach out to us at into the foldustin utexas.edu.
thoughtful comments will be acknowledged during a future episode. Your My Our Mental Health
Matters. Please leave us a review and subscribe to us on your preferred podcast platform.
And don't forget to check out the show notes for related content, including past episodes.
Transition Music by Northbound Taking us out now is Anna's Good Vibes by our good friend
Anna Harris. Thanks for joining us.
