- Welcome to another

edition of Break Fake Rules.

This is our little show

and we are very delighted

today to have you with us

and to be here with my

good friend Ryan Easterly

of the Width Foundation.

And Ryan, I have had the great opportunity

of actually sitting in

the boardroom with you

and your board, really a dynamic board.

You work at a foundation

that funds primarily in disabilities.

You have a board made up of

people with disabilities,

and you have an entire

orientation toward advancing the

field and providing greater support

and empowerment to the,

to these communities.

And I want to get into all of that,

but I want to start at a place

that I get asked about all the time about

breaking fake rules.

We are a spend down

foundation here at the St.

KY Foundation. And now you

are a spend down foundation.

Now, I believe you were there

when the decision was made.

So take us through it for a

second, if you don't mind.

How do you go from perpetuity

to spend down and why?

- Well, I would start by

saying my brief synopsis of

how does it feel to be around

when that decision happens.

It's a mixture of complexity

and excitement. Hmm.

But as far as how it came to

be, I think it's important

to understand that with

foundation was established in 2002

and its roots are as a family foundation.

Right. And I am not a

family member. Right.

But when the foundation was

established, it was intended

to only exist for one generation.

Okay. So 70 years. All right.

So from the outset,

they didn't have perpetuity in mind.

Yeah. But since

that time in 2011,

the board also began

to focus directly on promoting

comprehensive healthcare

for adults with developmental disabilities

rather than broadly disability.

And it was also in that

time that the board

became very intentional

in including people

with lived experience of

disability in the process.

Right. My first involvement

with the foundation was

as a board member

and one of those community slots in 2015.

- Oh, so you started

as a board member. Yes.

- Interesting. And so I think

when I think about what led

to the decision, I do give immense credit

to the board itself

and kind of the, the bones

of the board has constantly

asking itself how can we be

the best partner we can be?

That combined with the family

had had internal

conversations about its future

and its role within the

foundation and how it saw itself.

And there was some frank

discussions about, you know,

the family involvement.

Yeah. That coupled with we've

all experienced COVID-19.

Yeah. And especially as a

healthcare funder, we understand

how critical healthcare

is, especially for adults

with intellectual and

developmental disabilities.

So I would say that eventually led to

a very frank discussion

with the board to say,

rather than exist for

70 years, giving out 30

to $50,000 grants,

what if we reexamine the overall

lifespan of the foundation

to enable ourselves,

to enable our partners

and our grantees to

take some bigger swings

at the challenges they're facing?

And luckily, the board,

it wasn't necessarily

an easy conversation.

Okay. And it was also

multiple conversations. Right.

But ultimately, again,

the board is most

interested in being a strong

partner in the work.

And so we did make the decision

to ultimately sunset the

foundation in five years.

So at this point, that

means sunsetting by the end

of 2028,

but in return, that enables us

to make larger investments in

our grantees and in partners.

And again, enable them

to take some bigger swings

at addressing the barriers

that people with, with intellectual

and developmental disabilities face when

accessing healthcare.

- Okay. Let me come back

to that in just a second.

People have told me at times

that I say things that can,

that might upset some people.

So this might upset some people.

It won't upset you, I'm about to say.

But a lot of family foundations

see it as the mandate

of the board to ensure

that the foundation best solves, shares,

invests in the family's needs,

not the partner's needs.

So you are already,

you are already in this unique environment

where you're working

in a family foundation

that's breaking a pretty big rule in the

family foundation world.

At least in my experience,

Ryan, most several families

that I've seen, some I love dearly, kind

of make the foundation about them,

not about the world in which they operate.

You're already saying the

environment was partners first,

family, second, third or fourth.

What's going on there?

Why did that happen?

- And I too have those

conversations with peers.

And usually the first question is,

how do you have community member slots?

Yeah. Whoa.

That is entirely due to

Le O'Hara, our president

and the family member who

from the outset wanted

to make a difference for

people with disabilities,

but also knew that she didn't

have the lived experience

and that there's value

in having that lived.

So, amen. I can take no credit.

I do take credit in that.

That's how I became exposed

to with Foundation. Right.

But that is a privilege that with has

and his history, that we didn't have

to have those conversations

to convince the donor family

to have community member slots.

They understood that from the outset

and from my perspective,

it's only strengthened

the grant making, only

strengthened the efforts

of the foundation and help it better

meet its mission. Okay.

- So you are validating a

core tenant of this program,

which is when you break a fake rule,

something better happens

on the other side,

having a community spot, maybe several

on a board has some kind

of positive influence

on your grant making.

Huge fake rule. You're breaking there.

'cause normally we reserve 'em

for the family and friends.

Why does it make it better?

- It's, I would say it makes it better

because there are ways in which people

with lived experience can

understand the issues,

understand how multifaceted

the issues are.

In my own life, I identify as a black man

with disabilities, both a

parent and non apparent.

I'm also a gay man

who spent some time in

the foster care system

who grew up in the South.

Like the I, those are

several lenses I bring to

how I inhabit space, how

I exist in environments,

how I tackle issues.

I think every person brings

their experiences to bear.

And I, I would also point

out that you touched on

that it's important to not have just one.

And I say amen to that

with the, in the case of,

with foundation, not only do

we have multiple board members

who identify as people with disabilities,

but we also have a self-advocate

advisory committee we do

that are comprised of

adults with intellectual

and developmental disabilities.

And I can tell you every day,

every meeting, there are ways

that they challenge

and help me evolve my understanding of

how we can better address

the needs of adults

with intellectual and

developmental disabilities.

So even though I bring my own experiences

to bear in the work and,

and how we can address issues,

having multiple perspectives

and multiple individuals

that bring their own, it,

it only helps.

The disability experience is

also not a monolith. Right.

In general, I can say I started

my career in philanthropy.

I was a young man. I was a

young whip sniper, the guy with,

you know, fresh ideas.

I am now the older man. Is that right?

There's a little bit, a

little bit more gray here,

but unfortunately, you know,

more often than not many

of the rooms I walk into,

there isn't that lived

experience of disability Yeah.

In those rooms. Yeah.

That there isn't the level of conversation

that I would hope for.

But many of the issues

we discuss are the same.

Like, and that's why when I

think about with Journey, many

of the barriers that

adults with intellectual

and developmental disability

face as it relates

to healthcare, they're not new.

So that's why as a smaller

foundation that we,

we were making small and

meaningful contributions

and support for organizations.

But to me, the most

effective way to partner

with organizations is to put

your organization in a position

to enable organizations

to take some big swings.

Because obviously small

investments wasn't cutting it.

So, at least from my perspective,

we needed to do something

to put ourselves in a position

to be the strongest partner possible

and enable organizations

to do the hard work

and the ways that they

want to do it. Yeah.

- That's, you've got a friend in me.

Let's, let's stay on

this just for one second

and then we'll move on to another topic.

The traditional counterpoint

to the spend down, which is,

don't you want to be available

for problems in the future?

- I would say to me, as a

person with a disability,

and especially as a

healthcare organization,

healthcare matters now.

Lives matter now.

And especially in COVID,

we know no one is promised tomorrow.

Right. As it relates to

people with disabilities,

there's work that is literally

making the difference

between life and death,

surviving and thriving.

That needs to be supported. Now,

- What do you hope will

happen with these grants?

- So, from my perspective,

I hope for the grantees

and partners that receive

the larger investments,

the strategic partnerships,

that number one, they, they feel

as though we were able to

do what we wanted to do.

Yeah. Not what with ask us to

do, but what we wanted to do

and the ways we wanted to do it.

The second thing I'm, I hope to be able

to see is that people

with disabilities were involved in the

implementation of the project.

So not only as beneficiaries

of the services,

but also leading and advising on the work.

Because at the end of the day, one

of wi core values is the

leadership of the most impacted.

So we hope to see many people with,

with disabilities leading the

work involving in, in the work

and advising on the work.

- So I, knowing you're coming on the show,

I've been thinking about a

question for you, which I,

I'm really curious about.

'cause I actually was, I

should let everyone know,

I know Lynn, the principal

donor to not donor,

I guess family member of with,

and I remember when she

said she was hiring you

and she felt it very important

that a man with disability

or a woman with disabilities

would come and run the program.

She felt it was critical.

So let me ask, I'll put it in the,

in our language here at this

program, is there a fake rule

around hiring

or not hiring people with disabilities

to run programs, run organizations?

Do you think there's one out

there that lives in the minds

of organizations that we

need to break through?

- Yes. I, well, I think,

I think there are several,

- Well, I'm glad I asked.

- I will, I will start with that.

There aren't qualified

disabled professionals,

- Fake rule,

- That are capable

of working in philanthropy.

Yeah. And in grant making, there are,

I am not unusual, I am not special.

I'm not, you know, particularly

that shiny and great.

Trust me, I, you

- Know, I happen to think

you're all those things.

- But, but in actuality,

there are many other Ryans,

many other, you know, many

other individuals that are,

that are doing

and can do stunning things within

grant making organizations.

So, so I would, I would start

by saying, if you are a funder

and you've told yourself I

can't find qualified individuals

with disabilities, number one,

ask yourself internally,

are you making sure

that the environment you

are working in is open

and supportive

of people feeling comfortable

bringing their full selves?

And then from there, I'd say

reach out to your local Center

for Independent Living

or your local university

centers for excellence

and disability and say,

here are, here are our jobs,

or here are the folks we are looking

to attract to work for us.

There are qualified

people in every community,

in every state, in every county.

There are qualified people.

And then I, I know you haven't asked me,

but another fake rule.

I'd say break when it

comes to hiring people

with disabilities, again,

when I started my career,

I was a young man.

I'm now a little bit older

and I would like in my lifetime

to also see the philanthropic sector.

Not just hire people with disabilities

for disability portfolios, but

hire them for broader giving.

Yeah. You know, I have

lots of life experience.

I am honored and

privileged to do what I do.

And I love what I do

because in my mind,

if you can support people

in getting the appropriate

healthcare, it enables them

to do many other things they

want to do in their life

and survive and thrive.

But there are other aspects of my life

and my professional career that

would lend itself to others,

other kinds of grant portfolios.

So if you are a funder

and you are thinking

about having more people

with disabilities involved

in your organization

and in decision making positions,

please know that for me,

one rule you should challenge yourself

and one rule you should

break is it doesn't have

to be disability specific.

- Right. Right. Well,

I'm glad you said that.

'cause I was gonna say, we've

been, I, I asked the question

and I was asking it, given

your life experience,

now I'm gonna ask you

a different question,

a different topic, related topic.

And that is one or one

or two fake rules that

are coming up consistently

that really need to be broken

to be an effective

healthcare funder today.

- That's a complex question.

- I, I thought

- So.

I'm gonna say from, from

from my perspective, I think

first and foremost,

from the general healthcare

funder perspective,

it is understanding that

you should look for programs

that are led by disabled people

that don't just have them

as beneficiaries of care.

But there are organizations,

there are individuals

out there doing the work

that have the lived experience, that have

the professional experience.

I think of, there's an organization called

Doctors with Disabilities.

Hmm. Many people, they think about people

with disabilities based off of,

you know, their interactions

with the healthcare system.

Not envisioning or understanding

that there are medical

professionals with disabilities.

Again, there, there are

organizations that are led by people

with disabilities that

should be supported,

that should be funded.

- Alright. So let me throw another,

I get this question all the time.

They ask me, what are you gonna do next?

My answer is always, and

it's sincere. I have no idea.

I don't think about it.

I'm just here in the now loving this job.

What are you gonna do next?

- That is also a hard question for me

because I,

I never imagined this life for myself.

Like, I, I didn't grow up

understanding foundations existed.

It, it wasn't until I worked

at a foundation that I realized

that there were people whose

job is to give money away.

So I, I feel like

my life has already been

extraordinary in that, you

know, there was a time where I,

I worked for almost a

decade, you know, at the,

the coordinator then program

officer and various levels.

And I would occasionally

whisper to myself like, oh,

one day I'd like to run a foundation.

And I've done that. So I, I do think

- You've reached the

don't tell me it's the

top of the mountain for you.

It's, you've got something

else out there. It's,

- It's, it's not, but it's, it's also,

and I think, you know, many,

many people, especially

multi marginalized people, it's

like, yes, I, I have dreams

and I have hopes, but I

also, there's not a roadmap.

Yeah. For sure. So, but

I I, I do know what I've

promised myself is no matter

what my future holds, I do want

to continue to hold the door

open for others to come through

and others to enter philanthropy

and work in philanthropy

and lead and be in

decision making positions.

So regardless of what my

personal future holds, I do see

that as something that I

will always be committed

- To.

So let's talk about your inspirations.

Who's, who's a rule breaker

out there that you've

been inspired by your life.

There's no doubt if people

don't know you already,

if anyone watching this show

will find great inspiration in

your story, who is it for you?

- I think for me, when I think

about questions like that,

it, it does come back to there

are well-known people that

of course we all look to.

Yeah. But I think within, in

my own life, what continues

to drive me are the people

that may not be as well known.

Yeah. But still broke rules.

Like, I think about my own journey.

I had a resource teacher, Ms. Bowman, who

she was one of the

first people to be like,

you can be a leader.

'cause I the fact I'm

having these sort, this sort

of conversation with you

and it's more public.

Yeah. Even though,

hopefully I'm handling it.

- You're handling it.

- It is, it is, it is not

how I am wired.

Yeah. It is not how I view myself. Yeah.

But Ms. Bowman was one of

the first to be like, no,

you can be a leader.

Mm. Like, I've, I've seen you do it.

You know, you're gonna do it differently,

but you're gonna do it.

And then I think about my vote

vocational rehab counselor

who I graduated with a

college degree.

I had run multiple organizations.

I was, you know, kind

of stellar in Alabama.

And I'd done a lot. And as I,

as I said, like among those,

it's, I was the first ever former delegate

that then became chief of staff

for the leadership program.

Right. I had been appointed to

a commission by the governor.

Like, you know, I was doing a lot of

- Work. You're doing a lot of work.

- I, but I came back

and the, the support

that I got from voc rehab,

they were sending me to jobs

where one of my jobs would've

been shredding paper.

And although there is nothing

wrong with retic paper for me

and, and my journey

and what I wanted, that wasn't ideal.

And my vocational rehab

counselor, Ms. Kennedy,

she supported me in saying, Hey, we need

to shake things up

because we've invested a

lot to help you graduate.

You've also worked a lot.

So we need to support you in getting a job

that is more than shredding

paper. And again, there's, and

- This is, this is after

you've been a chief of staff.

Yes. Yeah.

But nothing, again, again,

nothing against shredding paper.

And you could have been a chief

of staff who shredded paper.

And I, my understanding is

there's been some great scandals

where chief of staffs have

had to shred paper, but

but not for you.

- Yes. What? And,

and trust me, there,

there, there is not much

that is different about me now.

Right. That is, that was the

same person that, you know, had

different people look and say, we know

what job shredding paper.

And there, there are people I know

and that work with that, you know, there,

there are talented people everywhere

that they just need the opportunity.

So as a funder, again, if you're,

if you're telling yourself like,

where are the qualified people?

No, just reach out to

organizations, reach out, reach out

to people, they're there.

The only difference between them

and myself is

that multiple times I had

people break rules ah,

and open doors for

- Me. Interesting.

- Like, for, for me, I also think,

like Lynn in a way broke

- A rule.

She did. There's no doubt.

- Because there, there was nothing

necessarily in my background

that says he's going

to be a phenomenal executive director.

I do think there was plenty

to see that, you know,

great program officer,

awesome program officer.

And that's, I I've been on

my own journey, journey.

But she broke a rule

and said, well, for one,

I wish she was here,

but she broke a rule in, in

saying, this can be the person

and, and we're also going to support him

in ways that will enable me to thrive.

Yeah. And so I think,

but there have been

multiple people in my life

that broke rules that enabled

me to be who I am today.

I hope that I myself

continue to break rules

to help others also achieve

what, what they want in life. All

- Right.

Let's, let's summarize this.

'cause we've covered a lot of ground here

in very short order.

The, here's some of the rules.

You've broken, you've

broken the perpetuity rule,

you've broken the community seat rule,

and we covered earlier.

And most important of all is you see it,

you've brought it up several

times during this interview.

You've broken the rule

about how people look

for qualified people for their jobs.

These are like three sacred

rules that have made a,

that you've broken, that have

made a huge difference in with

and in certainly your life.

And kudos to all the people

around you that did the same.

Ryan, this has been a very

inspiring time with you.

I've had it a couple of times now.

I've learned so much from you

and I am confident that all

of you have learned a great

deal from Ryan as well.

Thank you so much for coming on,

and good luck with the remaining

years of your spend down.

Thank you. And we will be

back with another edition

of Break Fake Rules.

Thank you for joining us.

Next time on Break Fake Rules.

You'll hear from Jennifer

Richer, a philanthropist

and author who wants donors

to give away half their daf.

That's charitable money that

otherwise sits in donor-advised funds.

Thank you for tuning

into Break Fake Rules.

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By 2029, our producer

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Special thanks to our videographers

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