All right. Welcome to the AdaptX Podcast where we have conversations with individuals
who are building accessible products or businesses, advocating for inclusion or excelling in adaptive
sports. Our intention is never to speak on behalf of those with disabilities, but give
them a platform to share their ideas and amplify their voice. Today I'm joined by Kim Knackstedt.
Kim has a PhD in special education and policy from the University of Kansas, was a Joseph
P. Kennedy Jr. Public Policy Fellow, a disability policy advisor in the U.S. House of Representatives,
and then later in the U.S. Senate. In January of 2021, Kim was appointed as the first ever
director of disability policy for the Domestic Policy Council for the Biden-Harris Administration.
Following her experience in the White House, Kim was a senior fellow at the Century Foundation,
director of the Disability Economic Justice Team, and director of the Disability Economic
Justice Collaborative. Now she runs Unlock Access, an accessibility and disability policy
consulting firm. And all of those experiences have led you to this moment and appearance
on the prestigious Adaptex Podcast. Congratulations.
Thanks. But all jokes aside, thank you for being here
and your willingness to have this conversation. I'm really looking forward to learning from
you. Yeah, I'm excited to be here. Thanks for having
me. So I similarly pursued a degree in special ed
before pivoting to the career that I have now. So maybe what initially influenced you
to advocate on behalf of people with disabilities or pursue a degree in education, and then
maybe what experiences led you to pivot away from the classroom?
Yeah. Yeah, it's funny. I mean, my background doesn't seem traditional by any means, seeing
that I started as a teacher and ended up in the White House and now doing this. But I
look back on it and I'm asked this question a lot, like what got you into it? I ride horses.
And when I was in high school, the barn I rode at actually had a hippotherapy program.
It's a therapeutic riding program. And so I spent a lot of my weekends volunteering
at that program because I experienced horses. So the physical therapist would be with the
kids and then I would lead the horses. And I loved doing that. It was so much fun. It
never really seemed like work. I really enjoyed it. And I thought this is the career I'll
have. I'm going to go, I'm going to become a physical therapist. I'm going to open a
hippotherapy program. As I got older, I realized that's actually very hard to do. It's also
very expensive. Horses are not an inexpensive thing to have, especially trying to run a
program like that. So what I realized is what I really enjoyed was actually working with
kids. And as my career went on, something I also realized is I so identified with the
kids because I have chronic illnesses. I didn't really come into that identity until a little
bit later in my life, but I was identified with many of the kids as well and saw myself
sort of in them and working with them. So that really drove me into a degree in special
education. I loved working with kids. I love teaching. I actually taught for four years
and loved it. I taught K through six students with disabilities. I was in Kansas City because
I was working on my graduate degree as well at the University of Kansas. And I loved it
for a while. It was great. But it really started to see the ableism and the racism words I
have now to describe what I was witnessing that was so embedded in the system and how
my students were treated. And that started to drive me away from wanting to just be a
teacher. And I started to see these systemic problems. And the kids I taught had pretty
severe mental health diagnoses and had been deemed, I'm using air quotes, the problem
behavior kids, which was such a terrible way to describe them because it was the system
and the structure and the context that was the problem. It had nothing to do with them.
And at fourth grade, I had other teachers coming up to me saying that the kids were
going to end up in jail. Why was I bothering? I was crushed by that. And I realized like
I needed to do something different. As one teacher in my early 20s, that was, this was
not the path to success. I left teaching, got a PhD to really dig into systems change
and how to make a difference. And that set me on the trajectory that I'm on now.
That has some similarities or parallels to the social model of disability, I suppose.
It does.
Yeah. In the course we teach, we start the first modules on the social versus the medical
model because I think most people in the fitness space view the impairments associated with
disabilities and they want to learn about the diagnoses, et cetera, when ultimately
we talk about how you're training the individual in front of you, you're not training a label.
So I think that social lens is an interesting perspective. And I don't think many people
are exposed to it unless they're like in this space. So basically that your disability is
a product of your environment, not necessarily physical characteristics that you possess.
So that's, I think, is an important lens to see a lot of these things through. When you
were in your PhD program, is that when you were first introduced to more like government
responsibilities or policy?
It is. It is. And to be honest, coming from education, and you may have seen the same
thing, is I really thought the way to make change at a systems level was actually kind
of state because so much of education is governed at the state and local level. And so my thought
was, OK, I'm going to go get a PhD, then I'll go back to the state or local level, and I'll
start making change in kind of the education system that way. But as I took classes, and
this is the thing about the PhD, I learned a lot, but what I actually really learned
is how to think differently. And the content was great. I learned the University of Kansas
has one of the top programs in special education in the country. So I learned from some of
the best faculty that are out there. But I really learned how to just think about problems
and come up with different solutions and apply different lenses over everything. And that
was the skill, that skill set is I think what actually gave me what I needed to be successful
in the future more than anything. But I started to think about was state, like was the state
and local system and the levers, was that really what I wanted to be pulling on for
policy. I did an internship at the Kansas State Department of Education, loved the people,
loved the work, realized that not for me. And had the opportunity to apply for the Kennedy
Fellowship that you mentioned in my intro, which anyone listening, whoever wants to get
into policy, I highly, highly recommend it. It's really the only fellowship for the federal
government that is focused on disability. You can be in your mid-career, you can be
early career, you can be late career, you can be a person with a disability, you can
be a family member. If you want to know disability policy, you should apply. And I can send you
the link for the show notes. It's a really great fellowship. And I thought there was
no way I'd get it, right? It's one person a year. So applied and then a very quick turnaround
in an interview in December, like middle December, they told me the next day that I got the fellowship
and I needed to be in DC again, like move to DC by beginning of January. So my husband
and I went back to Kansas, packed up our things and we've been in DC ever since.
Yeah, we work with the University of Kansas' Down Syndrome program on a research project.
They have a really strong team of professors there that have a lot of publications on Down
Syndrome and physical activity. So working with a couple of professors there, that's
been a great project. But what was your pitch for the Kennedy Fellow? Did you have to present
a project or a specific idea?
You sort of just write. It's like a cover letter, but not. It's like four pages, just
like, why should it be you? Which is so weird. And I really laid out that, and this has actually
been not to be too academic-y, but that I see the value in connecting research policy
and practice. This has been my conceptual framework, actually, since my PhD program,
and something that I still use everywhere I go. And I see it, people joke I should get
a tattoo of this, but I see it as a triangle almost, but where research, policy, and practice
all have arrows, bidirectional arrows to them, everything is connected. And one isn't elevated
over the other. And research connects to policy, but they drive each other. You can't have
one without the other. And the practice is there, too. What's happening on the ground
is driving the others. And this is true no matter where you work, whether it's education,
whether it's in the corporate sector, whether it's in non-profit, whether it's in sport,
no matter what it is, this can be applied. And so it's sort of a lens to look at everything
through. And that was sort of the pitch I made, and they seemed to like it.
How long was that program? Was that a year or two?
It was a year. And so the placement I chose was with US Senator Patty Murray on the Health,
Education, Labor, and Pensions Committee. It was a great experience. It was in 2016,
which there was working for a Democrat. Everyone was thinking. It had very different thoughts
about how 2016 would go. So there was a lot of different momentum when that year came
to a close. But I did have the opportunity to work on the team that got to dig into nominations.
And so that was really fun. Learned a lot about research at the end of that from a nomination
standpoint. And then I stayed on the Hill. I went over to Bobby Scott's office on the
House side. So I was then getting Senate and House experience. And Mr. Scott was a fantastic
member to work for. He is a lawyer, and he loves to dig into all the nitty gritty details.
So you have to write really long memos and have everything cited. So my research brain
loved that. And he was really trying to emerge as a leader in disability. And so really being
able to build up a portfolio for him was super fun.
One thing that, and I don't have the first ounce of experience in anything government
or policy wise, but it seems like it ebbs and flows, obviously, with the political situation.
So is it frustrating to have DI initiatives come to the forefront of people's thinking
and then have them pushed back? And then is it almost like every four years, some of the
work you do is like reversed?
It can. I mean, it is ebbs and flows. I will say the nice thing about disability and accessibility
because they're a little bit different. They're not as like political, big P political in
the sense of like Democrat, Republican, because they're a little bit more bipartisan. And
so some of the work halt, I'll say actually during election years, the work really halts
across the board because everyone goes away. So that's almost like worse than whoever is
in charge because everyone's focused on other things. And so like this year will be the
hardest for like any work, you know, 2016, 2020, you know, those years where 2020 was
odd just generally because of the pandemic. But those years are the hardest because of
just work doesn't really happen. And so you sort of have to halt all the good things you're
doing, redirect and then pick them back up. But the good thing is, you know, there's other
ways to go about making change. And I think that's where over time, you know, spending
time in government, being able to see House, Senate, White House, I started to see what
are the other levers outside of those really traditional policy, like lenses, and then
how else can you actually make change and like lasting change. And that's where I started
to get more interested in how to help others to start to do that.
What projects during that experience did you find to be most impactful or that you're kind
of most proud of working on?
Oh, gosh, there's so many. I mean, it's funny, because it's always like one step forward,
two steps back in policy. But there's definitely projects that I'm really proud of and excited
about still. And again, it takes so much time because government is like the slow moving
machine. I would say one of the things I'm most proud of is the work on sub minimum wage.
And so I think so many people don't realize that it is legal to pay disabled workers less
than the minimum wage, not like some states have $15. So you're paid, you know, $10. No,
it's legal to pay workers with disabilities a penny an hour. And that is that for so long
was sort of kept in the shadows. And there's been really substantial change across states
since Mr. Scott introduced a bill, 2018 or 2019 on actually, like starting to phase out
sub minimum wage. Now that bill hasn't passed, but it provided a roadmap for states to start
doing the work. And there's been this really big swing and states starting to do it. And
that's fun to see. You're like, I did a thing. This is it. And then I'm also really proud
of the work when I was in the White House, I led the diversity, equity, inclusion and
accessibility executive order, which was one of two massive sweeping executive orders that
President Biden signed on day one. And so it was an all agency executive order, again,
change EO, like note to self, not every single agency has to do everything. But it was really
fun to like work with every agency from, you know, Department of Labor and Commerce and
educate to like really, really, really small agencies with like 10 people. And to really
talk about how do you move DEIA, A for accessibility forward and think about this and a meaningful
way and start building their plans. And that was hard, hard, hard, hard work. But it was
also some of the most fun work that I did while I was there.
You said that disability is more bipartisan. So do you think it's ever a disadvantage that
it's grouped in with DEIA?
Yeah, I do. Yeah. I mean, it can be. That's why I think it's important to be like to sometimes
separate those things out, actually. I like to say equity, access and inclusion and just
flip it around because that or drop equity, because for some reason, sometimes the word
equity is the most like triggering word for friends across the aisle. Don't ask me why.
But sometimes just inclusion and access is like the right words to use. And so whatever
semantics it may be, right. You know, it's a word game. But at the end of the day, my
goal is to make sure that people with disabilities in the US have the same opportunities as non
disabled people in the US have equal pay. And we actually can start to fulfill the outcomes
of the ADA. I just think we've stagnated for so long. That's where we need to start moving
forward. So yeah. Yeah, I think obviously on a much smaller scale and maybe not quite
as significant, but I kind of like the same way in my work with fitness. I think the biggest
issue is that people with disabilities just don't have opportunities. And you can break
down all the various barriers and facilitators to physical activity for individuals with
disabilities. And there's no shortage of literature on that. But at the end of the day, it comes
down to I think there needs to be more environments and more opportunities. So that's where like,
I think my gym has obviously a small local impact in my community, but like the course
that we teach, we hope that it leads to other people opening facilities like ours. Maybe
going back to the sub minimum wage comment, you've you've written some about socioeconomic
status. I'm just going to look at some of these statistics that you cited. You wrote
a post for the Century Foundation and you have that 21.6% of disabled people are considered
poor under the census's supplemental poverty measure compared to 10% of people without
disabilities. On average, workers with disabilities are paid 74 cents to the dollar for their
non disabled peers and that about nearly half of renters with any disability experience
housing insecurity. So socioeconomic status is obviously a huge barrier for a lot of individuals
with disabilities. And correct me if I'm wrong. So my understanding is that a lot of people
with disabilities can receive supplemental security income, so SSI, but that it places
a threshold on how much you can make to qualify. So it essentially disincentivizes working
because if you make too much and you don't qualify. But then I was reading something
that you wrote about Medicaid and how you have to demonstrate that you work at least
80 hours, is it a month to qualify for that? So where is this balance between like incentivizing
people with disabilities to work, disincentivizing them to work, and maybe what needs to change
within the system to improve their work experience and improve their socioeconomic status?
Yeah. I mean, there's been a lot of efforts to try to like, bad efforts to try to put
work requirements on a lot of our benefits programs. And so there's been a fight against
that. But you know, to the SSI piece, and honestly, to all of this is one of the things
I hear a lot is like, oh, well, our system is broken. Well, it's not really broken. It's
actually working exactly as it is, which is to trap disabled people in poverty, which
is really terrible. But you know, when you have a cap on how much you can have in savings
for SSI, which is, you know, a grossly inadequate amount that nobody can possibly live on, then
of course, the system is working as it should. And when that has been changed, or even elevated
with inflation, then yeah, the system is working as it should, and it is trapping people. And
so there's a balance, we need our benefits programs, we need our benefits programs to
be realistic about helping people and anyone right, because I'm going to go broad sweeping
with benefits programs here, because there's also we can group in staff, we can group in
Medicaid, we can group it, you know, I mean, there's a lot that are really, really important.
And these programs all need to be lifting people up. But then you hit a threshold where
someone may want to do more work, right? Let's say, some minimum wage, let's say somebody's
been sort of trapped in a low, very low wage, but now they want to go out and make some
more money, maybe they might get insurance through there that works for them through
their employer. And that's going to kick them off some of these programs, there needs to
be benefits counseling and support to make that transition successfully. And a little
sneak preview, I'm working with New America, a DC based think tank, and we have a report
that will be coming out in February, that actually does a big look at sort of the state
of states on sub minimum wage, comprehensive supports, benefits counseling, and gives a
little bit of a ranking and, and score on how states are doing on this. And, you know,
as a preview to sort of the results, comprehensive supports make a big difference. And it can
actually help states to make lasting change.
So you think so it's more at the state level than the national level?
I mean, the national level, I think would be great to make some change, but Medicaid
is going to always be a state driven program. And then a lot of the benefits counseling
does go down to the state level. So I think we can drive systems to start making that
change. But a lot of it is going to be up to our states to kind of do that. Now, some
minimum wage is one thing that can be done at the federal level, we can get that done,
we can eliminate that. But at the end of the day, some of the employment initiatives, some
of the benefits programs, we can drive states and incentivize states to start making change,
but they are going to have to be the real, you know, drivers of actually doing it and
kind of taking that initiative and those incentives to kind of cross that finish line.
Accenture published a report, I believe it was with disability in the benefits of hiring
a more diverse workforce. What have you found? Or maybe what did you learn?
And from that report and the work that you do, if you're trying to convince a business
to be more diverse in their hiring practices, or make accessibility improvements, kind of
what are the key things that you're trying to communicate to them?
Yeah, definitely. Well, there's, Accenture has done, I think, two reports, maybe there's
an hour of which one it is, but one of them talks about like more disabled people in the
workforce actually raises the overall GDP of the country significantly. I mean, it's,
it's a big bump, which is incredible because you think about, I mean, this is an economic
case, honestly, and that's actually one of the things to go to a company with and say,
this is, this is an economic case for you, right? You are, you are not only doing a good
thing that feels good, right, but you're actually bringing in an entire population of people
that is benefiting the economy. And so this is a driver to the local economy because you're
going to have more money in the pockets of people that are now buying your products oftentimes.
So you're actually building a customer base as well. And you are, you have more workers
who have shown disabled workers actually have history of being, having higher retention
and tend to have a lot of other really positive workforce benefits. So there's some really
good economic cases to be made of just hiring disabled workers. It's also a population
that right now is underemployed and oftentimes has advanced degrees and others. So it's a
part, like disabled workers tend to be a population that just are not well skill matched due to
places not hiring people with disabilities. So you can often find people for like unique
jobs if you actually are willing to open your search and, and, and just honestly make usually
free accommodations. That's the big thing companies often are afraid of is accommodations.
But I think we know most accommodations are free and the rest are typically are under
$500 for a one time cost. Yeah, I think that's one thing that holds a lot of gyms back and
I've talked about it on a bunch of different episodes that you just assume that like accessibility
is some sweeping, drastic overhaul of equipment and everything. And really it can be more
of a social, emotional and a policy type of modifications. And like you said, just accommodations.
How can you contrast? So I read reports that disabled spenders have X amount of money to
contribute. So how do I want to phrase this? So there's, there's a lot of consumer spending
by people with disabilities, but that you also have the statistics showing that their
lower socioeconomic status. So not that it has to be one or the, not that it has to be
one or the other, but are, and you don't want to group all people with disabilities into
like one group, but are you portraying to companies that there's this target market
that they're not addressing by not creating a more accessible product? Is that, is that
one of the like paths or avenues that you would? Yeah, I mean, definitely it is true.
It's hard when one in four adults in the country is disabled, it's really hard to be like,
Oh, people with disabilities. Cause everyone's different. I mean, I have chronic illnesses.
Most people looking at me wouldn't know I'm disabled. Right. And so I could mask pretty
well most of the time. I mean, you wouldn't know that I just did my infusion this morning.
Right. Like my accommodation is that on certain days I need to work from home, which now I
work from all Italian all the time, but like, you know, that's like an accommodation I need.
But again, I don't represent just as you open the show, like I don't represent all people
with disabilities and I would never try to, but that also means somebody who uses a wheelchair,
it doesn't represent me either. Cause our needs are so different. And so I think that's
the big thing is thinking about how do you, how do companies think about not only universal
design, but inclusive design, which are two really different things. And for both of those
both like for their retail spaces, for their hiring, for their products, and really thinking
about both of those and everything that they're doing. So it's creating accessible policies
for their recruitment, hiring, retention, and then also for their outward, you know,
customer base as well.
Yeah, absolutely. And there's maybe you can kind of help me sort out this thought process
a little bit. But one thing I, one thing I see in the fitness space a lot is that programs
for people with disabilities are free. And maybe it's my bias from running a for-profit
set, a fitness center that incorporates a lot of people with disabilities. And we're
also fortunate to be in maybe a higher socioeconomic status area where a lot of my clients are
still supported by their families. So you can preface it with that way that we have
those advantages and those aren't barriers for a lot of our clients, like the financial
and stuff. But is there any negative that you could see from this, I guess, trend of
programs for people with disabilities all need to be free? I guess maybe do you have
any specific like first reaction to I guess that idea?
Yeah, I mean, I think, I think there's, there's always two sides to everything, right? And
I think there's, I actually have seen and had a lot of conversations with people about
having like sliding scales on almost everything. And so rather than just saying everything
is free, it's how do you, you know, what, whatever the thing that is free, maybe it's
actually no, you know, it's, it may be like pro bono, essentially, for some, and then
it, it has a cost for others, it might be a slight and then so different clients pay
different amounts. And that's a reality and honestly, the most services anymore. And so
actually thinking about it that way. So for somebody who's on and receiving SSI, yeah,
it might be free. And because when you have only $2,000 in your pocket, you cannot pay
for an additional service that you desperately need. But when you are working at a top tech
company, and maybe you're a VP with a disability, yeah, you might be able to like shell out
and pay a little bit, right? So I think finding that balance and also finding what's right
is is a piece of it. But again, there's going to be multiple thoughts. And it's just sort
of like, it's gonna depend on the product too. Yeah, I think maybe and mine's more just
the fitness lens, but like maybe my issue is that, like, you're just, it's diagnostic
based and not needs based. So like you said, it's a sliding scale. So I would prefer to
see it be not here's a program that meets once a week for all everyone with a disability,
it's free. And then you get to the point where it's like, what type of disability do you
need? How disabled do you have to be to qualify? And that kind of makes all these gray areas
and like at my gym price is never going to be a barrier if someone comes to me and they
want to train like, we're going to make those exceptions. But I would I would say the dozen
people who are on scholarship at our program, most of them don't have disabilities. So it's
like, and again, different socioeconomic areas, you provide what the individual needs, but
it's almost like an issue is too strong of a word. And I don't mean to be like negative
towards it. But I sometimes see stuff, stuff that goes viral, sometimes like individual
opens gym for people with disabilities, that's free. And that stuff's great. And it's well
intentioned. But it almost like marginalizes people with disabilities by like reframing
this perspective of like, charity case to a degree. So I don't know if I have an answer.
But it's just something that like, it's hard to communicate without sounding negative.
And I'm not sure what exactly the answer is. But it's just something that I see and I think
about. Yeah, I think that's actually exactly right. Because again, you don't want things
to go into like, I don't know if it's okay to send a podcast like inspiration porn.
A lot of people said that. So yeah, okay. But like, that's what I think sometimes things
become. And you don't want that or to be doing it just simply to go viral, which I do think
happens all the time. And or to get the news story. And, you know, at the end of the day,
the goal of the ADA is equal opportunity, right? And so it should be equal. And but
at the same time, that does mean there's going to need to be exceptions for anyone, disability
or not. And so I think, I don't know, I do like universal design in the thought of that
of like, what is going to make this accessible, broad term accessible to actually everyone,
disability or not? And, and then how do you then scale that?
Yeah, yeah, absolutely. So I think that I think that's an important thing to figure
out for all businesses is kind of how can you provide like how can you provide needs
based assistance? And how can you, I guess, vet different inquiries? And how can you support
clients with different levels? But another aspect of bears and facilitators, I suppose
would be transportation. You were on a roundtable. Yeah. Was it last year? Yeah. With the Department
of Transportation? What What were you guys addressing? Or what were you kind of working
on? Yeah, it was a great roundtable. The Vice President was there. And Department of Transportation
and a number of folks from from DOT. And it was really digging into actually there were
so many people, not everyone even had a chance to speak. But it was great to kind of engage
with with a lot of folks. We were really talking about what what can and will DOT be doing
to move forward many of the issues of the community around accessible, reliable, affordable
transportation. Airlines was obviously a top topic. Um, a lot of the other issues didn't
get quite as much attention. Now, I will say I do think it's really important to think
about transportation within communities, because if you have an accessible or really great
gym, if you have an accessible store, but nobody can get to it. That is a problem. So
I think it's important to think about all modes of transportation being accessible,
sidewalks, neighborhoods, and sort of like the urban planning view of it. And that I
think is is a really important part of it, not just airlines. But airlines has been just
in the kind of limelight, I will just say, because of all the problems and the just huge
amount of damaged mobility devices, I mean, it is, it's a lot. And so I think it's important
that DOT is taking some pretty aggressive action there. I would expect we'll continue
to see more. So there's talk about future regulations and other actions that they'll
be taking. I hope that gets done by the end of this term. I know there's a tight timeline.
So more will be done there. But he has a it's a good agency with a lot a big agenda ahead
of them. And so I think they they have some direction that they'll be taking. So I'm excited
to see what comes of it.
I didn't even want to try to say Pete's last name because I knew I was going to butcher
it when I was when I was prefacing that talking point. So you so your role with the White
House was completely new, right? You were the first one to kind of occupy that position.
How did that come about? How did you how were you determined to be the person for that role?
I don't know if speak to the latter, but I can definitely speak to the first. So in President
Biden's platform when he was candidate Biden and in a couple of the other platforms as
well, it included actually naming somebody to the Domestic Policy Council to drive disability
policy. This was a really top priority of the disability community throughout the campaigns
back in 2020. I had seen that. It's funny because I was on the Hill. So I had to be
working on the Hill. I had to be fairly removed from the campaigns. It's a legal issue. So
I had seen that. I thought it was really cool. I honestly hadn't really given a whole lot
of thought. I had a couple of people that were like, would you be interested in this
position if it happens? And I was like, yeah, I mean, that'd be cool. But I don't think
that'll happen. And I loved working for Senator Patty Murray. I mean, she was also just an
amazing boss. I'm from the West Coast. There's kind of a Patty Murray family. It's a thing.
So I really didn't think I'd be leaving the Senate. We had a big agenda. I don't know.
COVID was consuming everything. And so it just, I don't know, my mind wasn't actually
thinking about going to the admin. Then came the end of December, early January, President
Biden won. And I got a call, I think it was like at 10 PM one night, maybe like a Thursday
night. And it was somebody from the transition team that was like, hey, we're interested
in you for this position. Can we do a quick interview right now? Sure. Great. So we had
a call. We talked about a few things, talk about on a whim. And then they were like,
great, great, great. We'll be in touch with next steps. So then got a ping and was like,
hey, Saturday at 7 PM, can you do an interview with Ambassador Susan Rice? She's like, sure.
Great. What do you wear to a 7 PM interview? That was a trip. And also Susan Rice, she
was like, whoo. And so yeah, did that. And then by Sunday, I had an offer to go work
in the White House. And it was like, I think that next week was maybe January 6. So talk
about a whirlwind of a couple weeks. I went and cleaned out my office in the Senate while
there were tanks outside. So yeah. How did that transition affect your day to day life,
your work? Did projects immediately shift directions? I guess what did you guys start
working on once Biden? Yeah. By the presidency? I mean, the nice, Senator Murray's stuff was
able to just keep rolling. But everything again was COVID, COVID, COVID. So some of
the big work I had going on there was able to be halted and then kept going. I had a
Kennedy fellow. And so she was able to keep things moving. So that was all rolling. And
so that was good. I was remote at the time in the Senate and then stayed remote. So the
White House staff, we stayed remote until July, unless you were like in the West Wing.
And yeah, so we were, I mean, we launched an admin fully remote work. So anyone who
says you can't do remote work is wrong. Because you can launch an entire admin from remote
work. And I mean, a lot of people talk to the people to the Obama team who formerly
had their roles and they got like a roadmap of what to do, how to do it, who to talk to,
how to manage the agency they oversaw, etc. But I was standing up an entire new position
that was disability policy across the entire domestic policy council, which is every single
agency. And, you know, this whole new plat like policy platform essentially for the president.
So I was starting out a little bit with, you know, trying to figure out what to do. My
goal was to first pull together all the different agencies that had disability folks at them
and then start expanding. So quickly launched an interagency policy committee on disability.
And that grew and expanded and still continues today where it's a monthly meeting of agencies
talk about disability policy. With subcommittee meetings, the COVID guidance that actually
named long COVID, a disability came out of one of those subcommittee meetings. And it
was one of the fastest moving cross agency pieces of guidance. So, you know, fast work.
We went quick and handle a lot of stuff. So it was great. It was a trip. My health totally
crashed. But, you know, I wouldn't trade it for the world.
Was that committee predominantly people that are already in government? Or was it leveraging
the voice of people with disabilities themselves? Were you bringing in a variety and a diverse
kind of collection of people?
So that committee specifically was agency folks. So like already in the government.
We did actually have a lot of the staff that identified, career and political staff that
identified as disabled in the government. And then I also did a lot of meetings, even
though I was on the policy side and there's a whole part of the White House that does
public outreach, I still did a lot of meetings with stakeholders to make sure I was bringing
in the perspectives of stakeholders to represent the voice of the community. So that way I
wasn't doing anything that was going to be completely out of step.
It was also hard because when I got named, there were a lot of people that said I wasn't
disabled enough to be in that position. There was a lot of really cruel emails sent, which
are now part of the presidential record. There was a lot of things said that I did not represent
enough of the community. And that was a really hard thing to be getting at the very beginning
of an administration when you're launching a new position and to just try to push through
it.
Yeah. How did you receive those and kind of deal with them? Because I don't get emails
like that yet, hopefully maybe ever. But it is one thing that I'm very hyper vigilant
of is that I don't have a disability. And that's why we start the show by saying that
I'm not intending to speak on behalf of anyone, but I do feel like I'm in a somewhat unique
position to influence if we just look at fitness as a whole, more gyms to be accessible. So
if I just say, oh, I don't have a disability, that's not my fight, then it never gets done
or someone else would have to pick it up. So it's hard. I guess how can you be an advocate
or an ally while also appreciating that you don't have that lived experience? It's something
like in my LinkedIn feed is just a ton of professionals with disabilities. And that's
where I try to learn from that stuff. But sometimes the posts are always like, can't
be about us without us. And I'm just like, I'm not trying to be without you, but I'm
also trying to accomplish what I can. So I guess how do you walk that line between being
an advocate without infringing upon other people's experiences?
Yeah. I mean, I think the big thing is I tried to own my own experience a little bit more
and tried to start being more open, which was hard for me because I mean, I was coming
from the perspective of a staffer on the hill, which you're supposed to be invisible, right?
As a staffer on the hill, you're supposed to be up against the wall, seeing not heard,
unless your boss talks to you. You are on background when you talk to reporters. You
are not the public person. So people around me in my close circle knew that I had chronic
illnesses and in particular knew in 2019 my health had really, really crashed. I'd started
doing infusions in early 2020. And you could visibly see through 2019 to 2020 that I could
not mask as much anymore. And I was visibly sick. And so I tried to start when I stepped
into the hole in the White House, I tried to start owning and actually naming that I
was part of the community a little bit more, even though that was really hard for me because
again, I'd never been a person that was more at the forefront of things. And so it was
a totally new role to actually not be on background and be named in articles and go through that
process. It was almost like an identity crisis a little bit because I had to start being
a human like myself, like find my own voice, not just be the voice of all the people I
worked for. I still was helping the president, but I still also had to find out who I was.
And I always say, I'm speaking for myself. I'm speaking for my experiences. And then
make sure that no matter what I did, I was talking to a lot of other people in the community
and work with OPE to bring in all those perspectives because otherwise it just would have been
out of step. I don't, I've definitely learned over the past few years, there's going to
be critics, there's going to be criticism. I'm always going to get slammed for something
anymore and the roles I've been in, people don't like me for various reasons. And that
is just going to, you know, and then other people do. And like, I have learned to sort
of live with that through a lot of like coaching from people who've been in these roles before.
So.
You, you mentioned that you were kind of visibly sick during that time, but your, your disability
is predominantly not visible. What do you think people get wrong, like etiquette or
assumption wise regarding invisible illnesses? And do you like that term? Cause I do see
some people say that they don't like the term invisible illness.
I usually use chronic illness. I'm not super particular, but I usually use chronic illness
or illnesses. Cause I have several. Yeah. I think, I think people get wrong that like
it's, it's like it's invisible and like, it doesn't exist when I look fine. You know
what I mean? Like rather than I can be like actually sick, even if I like look okay. And
I think there's an assumption that like I'm just because I'm out and about and I'm, I'm
doing things that I'm fine. And like in reality, that's actually not, that's pretty rarely
the case. I'm pretty good at like putting on makeup and doing my hair and like put on
nice clothes and getting out and about because I've had to do that for so long. But in reality,
like my body can be in not a good place. And I've just learned over time to hide it pretty
well. But you know, I went to a holiday thing with a bunch of people, friends from the Hill
and everything. And the amount of people that came up and said, said, I have not seen this
much like color on your face and you looking this good in years. And it's true. My health
is actually in a really, really good place right now. And they, they all, I mean, every
person I saw actually commented on the difference in how I looked. And so for the first time,
they saw a noticeable difference. And that was actually really telling to me is the amount
of people that really noticed that.
Was that one of the reasons why you wanted to leave working in government?
It is honestly, you know, as much as I love the White House, and I loved working for Susan
Rice, I consider her a mentor, a friend. I would, you know, go to the moon for her if
she asked me to. And I got to staff President Biden in the oval, like how many people get
to do that? I mean, that was like incredible. He called my name out during an ADA event.
I mean, like there's some really wild experiences I've had that I will write a book someday.
But you know, it's at the end of the day, like it just, my health couldn't manage it.
I mean, I think we all know the White House is physically an old building. It also the
work functions in a very kind of old model of you work until you break. And my body just
broke earlier than others. And after 14 months, my doctor had a real conversation with me
that I was probably going to be hospitalized if I didn't take a break.
Yeah, that's a tough thing to manage because you've worked so hard to get to where you
wanted to be. And you want to have the influence that you were in the position to have. Yeah.
I was reading earlier this week or over the weekend, digital accessibility has been something
that's been very prominent in my LinkedIn space and various things that I've been reading
about. And it's funny because it was an article about how like the federal websites are trying
to adhere to digital accessibility guidelines. And to me, it's like, if the government can't
even be digitally accessible. Yeah, like, like how can you expect a business like mine
that's three people, none of us of which have any website design, like how can you expect
us to be fully compliant when at the federal level they're not even. So like you mentioned,
the ADA has come a long way, but it's and I know I don't believe ADA has specific digital
guidelines. I know that's WCAG. But I guess like what where would you like to see accessibility
kind of like focus on or trend in the in the coming years? Trend makes it seem like it's
transient and I know it's not transient, but like what what do you think are the most pertinent
issues? Yeah. Well, I am excited to hopefully see the web access rule, which focuses on
local and state governments get done. So that's from DOJ. It's a regulation. Because yeah,
federal governments are trying to comply with 508. And, you know, it's state and local,
having the web access rule would be huge to get them in compliance. And I think it also
sets that that rule, should it be finalized, could set a sort of glide path for small businesses
like us, right, and show us like, how can we do it? And also for big tech companies.
Because I do think the next phase would be Title 3. And so that would be everyone to
come into compliance, because I do think everything is digital now. I mean, I don't you know,
we all have phones, we all we order food off our phones, we order, you know, transportation,
we ever you walk in to many places, you know, I love a good coffee shop, half of them you
go into, you actually order off the screen anymore. So if we don't start getting our
tech into compliance, whether it's a website, or it's an app, we're just we're, again, talk
about an economic case, you're ruling out and eliminating a whole customer base. And
so I do think that's important. But I agree, it's actually not easy. I'm not I don't really
have coding experience when I was making my own website for unlock access, I used WAVE.
It's a website checker for accessibility. And so like every page I made, I would publish,
check it through WAVE, go back, fix things, do the next one, publish, check it through
WAVE, publish, you know, and I can't do the coding. So it was just like, simply going
through the website designer doing it. But that's a lot of time. And like, not everyone
can do that. And it's tricky, too, because like, there's just some things that like,
you know, it's just it's hard. So I think, I think tech is sort of the next phase. But
I do want to caveat, I do not want the ADA opened. I think that should all be done through
rulemaking. I think the ADA should be left alone and not touched. And everything should
be done through rulemaking, because the ADA is a sacred document that should just remain
as it is.
When I was more naive to it and starting our website for the nonprofit, like, I paid I
paid to have user way and digital accessibility overlay. I was like, Oh, wow, this is great.
So it looks so awesome. And they're salespeople, they're marketing people. And then recently
Level Access bought user way. I believe it's Level Access, if I'm correct. And everyone's
up in arms, like, oh, like overlays are are not accessible. Yeah, they're the worst thing
in the world. And Level Access has 25 years plus of like a prestigious reputation, like
promoting digital accessibility. So I'd like to believe or at least give them the benefit
of the doubt that they're not acquiring user way just to sell overlays. I assume they identify
that it's a solution and they want to be part of or they identify that's a problem and they
want to be part of the solution. But it's it's it's quite the landscape right now. And
it feeds everyone is not too fond of that. But I'm interested to see kind of how that
develops.
Yeah, yeah, I think coding and there's there's a number of startups that are really getting
into like supporting changing coding and helping, you know, build on more access. And I'm excited
to see where that we kind of like startup industry goes on that. Because I think that
is going to be a really like bringing in a startup to help you is going to be a real
benefit.
Yeah, absolutely. Now that you've transitioned out of government, we will talk about the
project that you're you're currently working on. So unlock access, do you want to tell
the listeners a little bit about it?
Yeah, yeah. So in December, I launched unlock access LLC, which is my own consulting firm.
I'm really excited to do this. It was scary to go out on my own. You might have felt the
same way when you started your your business. But especially for so long, I've been part
of these like, you know, big entities being a government and others. But what I really
decided is, I love conversations with folks about how can I help them on their accessibility
learning journey? You know, do they want to are they at the beginning? Are they just learning
how to be accessible? Are they develop their initial accessibility policies? Are they wanting
to become a national leader in disability and accessibility? Do they develop a policy
to kind of lay the foundation of the direction they want to go? Do they want to build a coalition?
Do they want to bring folks together to have conversations? Do they want trainings to really
dig in education being my background? I love a good training. So that's the stuff that
actually was like, really exciting me every day. And as much as I love research and doing
that, I just helping others to really like find their path towards the inward reflection
or word customer base of, you know, equity, access and inclusion is what was really exciting
to me. So I launched and my focus is really kind of that corporate customer base. But
I am also talking to some folks in the nonprofit sector as I can help them on their disability
policy focus as well. And having some conversations and enjoying my clients so far.
Yeah, it's a and I guess I've never really had a job I taught for a couple of years,
but where my time was victims too strong, but held victim by a specific company. So
now I've been self employed since I started micro, I guess is what I'm trying to say.
But it's definitely a different feeling of instead of you being confined by a specific
schedule, I'm confined, I'm confined by like the influx of responsibilities and possibilities
of things that I could be working on. It's been really hard for me to turn off, I guess,
because I know there's always someone I can connect with or project I can work on or problem
I can try to come up with a solution for versus being an employee and having a specific task
at hand. Sometimes I am envious of that type of position. So I'll be interested to see
how you find the two to compare working on your own versus working as part of a team
or are you going to have a team with unlock access or at least initially will just be
yourself.
Initially, it'll just be me. I've had incredible outreach asking if I'm hiring and I you know,
at some point potentially. But I think just me, I really want to kind of build up my clients,
especially this first few months, and then and then see if if others, you know, I want
to expand. But I think for now, just me. But yeah, I am really enjoying the sort of like,
I don't have to be glued to a desk just to be glued to a desk. You know, I can I can
do work. I've always been like a seven day work week type of a person where I'm like,
I have time on a Saturday, I'll just like crank this out or but then if I need to go
do something in the middle of a work day, then that's okay. You know, I there's that
flexibility is something that I I'm actually really looking forward to.
Absolutely. We wrap up a lot of these episodes with more fitness specific. Do you have any
thoughts as to what gyms, health clubs, etc. can do to be more accessible or inclusive
for people with disabilities?
Yeah, you know, I think the biggest thing is again, not being afraid of accessibility.
Like we were talking about kind of accommodations and accessibility, it is so much of a belief
in all of the people coming through the door are going to be really great, either employees
or customers. And so make that entrance accessible make and and I'm talking about a broad look
at that right and change the way you view the person coming in to experience your your
gym. Think about what are the easy things you can do to make equipment to make an accommodation
on your equipment or your classes? What's the or what stigma? Are you facing that is
making this difficult and seek out a training for staff? Sometimes that is like the first
step. And then moving forward from there, I like to use the curb cut example that curb
cuts were created by the ADA. And now everyone uses a curb cut parent pushing a stroller,
you know, delivery person with a dolly traveler with a bag, we just need to start curb cutting
everything.
Absolutely. That's a I feel like that's a great way to wrap it up. Kim, thank you. It
was really an honor to talk to you. I was a little astonished when you agreed to this
conversation, but I'm very appreciative of it. I hope people that are listening found
some takeaways from our conversation and are inspired to take action and advocate on behalf
of people with disabilities and kind of identify maybe locally in their community where they
can start to enact some change. So again, thank you for your time. Thanks so much for
having me. I really enjoyed this. Thank you for listening to the AdaptX podcast. Our effort
to amplify the ideas of our guests and create more inclusive and accessible industries is
futile unless these episodes reach a larger audience. If you enjoyed our discussion today,
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our website, www.adaptx.org. Until next Monday.