0:00
>> KATE: before we begin, we would like to let everyone know that this Commission meeting must follow the Open Meeting Law. Any votes taken during the meeting will be done via roll call
0:09
vote. We ask that Commission members please mute themselves when they are not speaking, andUse the raise hand feature if they would like to speak. Before speaking, please state your name
0:19
so everyone knows who is talking.For any questions posted from the audience in the Q&A for this
0:25
meeting, CDDER will be reviewing the questions and holding them until the end of the meeting.Today's
0:32
meeting is scheduled for two hours. We will have a break midway through the meeting, at about 4
0:39
PM. To make sure everyone can participate; we ask the following: We have CART services supporting
0:46
our meeting today. These are captions that help people follow the discussion. If you need help
0:52
turning on these captions, please let us know.We ask that people speak at a non rushed pace and
0:58
provide yourself with a brief pause for the CART transcriber to write what you have said.We ask
1:05
that you speak with as few acronyms as possible. Doing so will help all participants to understand
1:11
essential information that is shared here.We will try to remind folks of these items I just
1:16
mentioned, if needed, during this meeting and to keep us on track.When we end this meeting,
1:22
we will have notes made available based on what we talk about today.This meeting is also being
1:28
recorded, and the videos are available on the Commission's Mass.gov page and on YouTube. Next
1:35
slide please. We hope everyone has taken a moment to view the agenda. These are the
1:45
items we will be discussing today. We have some announcements. CDDER will provide a recap of
1:50
the last meeting. After we vote to approve last month's meeting minutes, we are going to start talking about our work on recommendations. We will talk about the purpose of this Special Commission,
2:02
the process for the report working group, the potential outcomes of the Special Commission,
2:08
including some examples, and the impact that we would like to achieve before it ends, and then we
2:16
will discuss any next steps and then wrap up the meeting with a vote to adjourn. Next slide please.
2:25
First and foremost, we want to announce the departure of one of the Commission members. Mary Mahon McCauley, who has served as a representative
2:33
of the Mass. Office on Disability, She will be retiring at the end of this month and will be stepping down from the Special Commission.On behalf of the Special Commission,
2:43
I would like to say thank you to Mary for her work on the Commission. Another person from the office
2:49
will take Mary's place sometime in the future. So, thank you very much, Mary. We've appreciated
2:55
you. I don't know that you're on, but everyone else should hear how much we've appreciated your presence at the meetings. And now we would like to ask Emily from CDDER to
3:06
provide a high-level recap of our last meeting before we vote to approve the minutes. Emily. >> EMILY: Thank you, Kate.This is Emily.At the last meeting, the Commission talked about
3:17
a need to make a plan to review the final report that our group CDDER shared with the Commission,
3:24
including identifying the questions the commissioners have about the report, deciding
3:29
how to create recommendations based off the report, and how to write those recommendations.The
3:37
commission also discussed a report working group that would assist with this work, and how it would
3:43
support the larger Commission.Commission talked about the upcoming schedule of meetings and voted
3:50
to approve a monthly meeting schedule through May of 2025.CDDER talked about the report that they
3:59
delivered to the Commission.They talked about the report's main areas, its overall structure,
4:06
and the opportunities for consideration by the Commission that were identified in the report.The Commission then discussed the content of the report and their feedback, and
4:17
they started a discussion about potential areas of opportunities for recommendations and next steps.A
4:24
discussion of these opportunities will continue in today's February meeting.Thank you, Kate.
4:30
>> KATE: Thank you, Emily. Before we dive into this afternoon's discussions, we have our vote
4:37
on the minutes from the Commission's last meeting in January. Draft copies of the meeting minutes
4:43
were emailed to members earlier this week. Do any members have any suggested changes
4:49
to the minutes?Okay.I do not see any hands.So we can proceed with the vote.As
5:00
usual, we will be conducting a roll call vote, but before CDDER reads out everyone's names, do we have a motion to approve the minutes? And please remember to state your name
5:09
before you speak.A motion to approve the minutes. >> ALEX: This is Alex.I'll make a motion
5:17
to approve the minutes. >> KATE: Thank you.Do we have a second to approve the minutes? >> This is Bill.I'll second it.
5:24
>> Beat me too it, Bill. >> KATE: Excellent.And CDDER will read the list
5:29
of the members' names for the roll call vote. >> Great. Thank you, Kate. This is Christine Roa
5:34
from CDDER, and I will now read out members names in alphabetical order by your last
5:40
names. When your name is called, please respond with Yes, no, Present or Abstain.
5:48
So I will begin. Elise Aronne. Kate Benson. >> Yes.Sister Linda Bessom.Reggie Clark.
6:15
>> Yes. >> Thank you, Reggie. >> Yes.James Cooney. >> Yes.
6:25
>> Samuel Edwards. >> Yes. >> Anne Fracht.Alex Green. >> Yes.
6:41
>> Bill Henning. >> Yes. And I may be in and out of this meeting because I have a current obligation in my office, too,
6:49
in case you don't see me.Thank you. >> Andrew Levrault.
6:56
>> Yes. >> Mary Mahon
7:02
McCauley.Evelyn Mateo. >> Yes. >> Lauri Mederios.Matt Millett.Vesper Moore.Brenda Rankin.
7:21
>> This is my second time being here. >> And are you voting yes or no on the meeting
7:29
minutes?What do you think? >> Yes. >> Yes?Okay.Thank you. >> Thank you, Brenda.Did I miss anyone?
7:46
>> KATE: Okay.Thank you, everyone.The minutes are approved.As a reminder,
7:52
copies of the approved minutes and all the materials from our Commission meetings are available on the Commission's webpage. Next slide, please. We'd like to continue our
8:06
discussion from last month and our plans for the upcoming work of the Special Commission. I'd like
8:11
to ask Alex Green to lead a discussion about the purpose for the Special Commission for State
8:16
Institutions and provide an overview of the process for the report working group.Go ahead, Alex. >> ALEX: Thank you, Kate.Hi,
8:30
everyone.When we were meeting in the report working group earlier this month, it came up
8:38
that it's been a long time since we started.It's been an even longer time since we first passed the
8:44
legislation that made this Commission, and we're getting close, obviously, to the end of this phase
8:50
of the work, and so everyone thought it would be a good idea to kind of get a story of the beginning
8:57
of how this all began because I think we all know that some members have come and some members have
9:02
gone, and we've had changeover in the Commission, which is natural, but I can see why it's helpful
9:11
to know how we started.When you think about what kind of recommendations you want to make.We have
9:17
this big report, and we have to do some stuff with it and I'll talk about that in a few minutes, but the biggest take away is we get to suggest some things based on what we've seen.And how
9:27
much to suggest and how to do it and what to say is probably, it will feel more comfortable to know
9:35
how to do that, I think, knowing how we all began this.And since I've been at this work since the
9:41
beginning of the legislation, I thought I would just share for a few minutes, so what I'd like to do is maybe take about no more than ten minutes to go into the background of how we began all
9:52
of this.And then spend another ten minutes or so going through what it is that we're actually going
9:57
to put together.What are we doing in the next few months?And what's that going to look like?And
10:02
hopefully that sets a nice stage for us to take up for the rest of the meeting a conversation about
10:08
what we'd like to start suggesting.And that's what we're going to do for the months ahead.And I can describe a little bit about that and take some questions.So I might move faster.My goal is not
10:18
to move slower than that.So the deep background on the Commission, where this all began, was actually
10:27
during the pandemic, there were at least two, it seems like probably three former institutional
10:34
sites in Massachusetts that were being used for holiday light shows.They were being used to
10:41
celebrate Christmas and Hanukkah, Kwanza, and have people drive through and see all these buildings
10:47
lit up with Christmas lights.And it was because people couldn't get together and gather in places,
10:56
and so it was a way to celebrate the holidays.But for a lot of disabled folks around the state, when
11:02
we learned about this, that seemed really wrong to be doing, because these sites are places, as we've
11:09
all talked about, where some good work was done, but there's also a lot of really, really dark,
11:15
bad history.And that's complex to deal with and deserves to be wrestled with in a more sensitive
11:22
way.A group of us, some of whom are members on the Commission, protested the use of these holiday
11:29
lights at one of the sites at the Fernald School, and we had some impact, but I don't
11:35
think that we had an impact in really getting the community to stop what they were doing.In fact,
11:41
much like we've talked about as a group with buildings falling apart in the middle of it all,
11:47
one of the buildings on the Fernald campus caught on fire, and the city of Waltham blamed the activists for this and it went back and forth and it was really ugly and it just seemed like this
11:57
was not the way to change people's minds and let them know that this history is important,
12:04
and that it relates to who we are today and how people think about us today.Because it's
12:10
not that far in the past.And so two legislators reached out.One is the state senator, senator
12:18
Mike Barrett, who's on the assistant majority leader of the Mass Senate, and Sean Garballey,
12:25
who is a house rep and a prominent disability rights legislator.And they said we're really
12:33
interested in this work and moved by it and want to support disabled folks around the state, and it
12:39
seems like one of the big problems here is that people don't know this history.They don't know
12:44
that there were big institutions everywhere.They don't know what those institutions did.They don't know that there's good and bad.And we'd be curious if you've seen other issues.And I said,
12:55
I have seen other issues.There are issues with records.And whether family members, let alone the general public knows about this history, do family members know about it,
13:05
can they get those records?Where are they?There's these cemeteries all over the place.There are big
13:11
issues at hand.And they said, okay, great.Let's come up with some language to create a Commission
13:17
to look into this.This is a big deal.It's going to take a lot of work to kind of figure out.That usually takes a lot of people.And this deserves it.It's a big part of the history of Massachusetts
13:28
because as the report shows, we're the first state in the country to have state schools for people
13:33
with intellectual disabilities and to have we were one of the earliest and we've been one of the most
13:40
influential with what were called state hospitals but were asylums for folks with mental illness.So
13:47
together we drafted some language, and they said we don't really you tell us what the steps are to
13:54
get there.What we know is that there needs to be public awareness about this down the road.People
14:00
need to know these stories.That means there probably needs to be education, and there probably needs to be some idea of something like a museum, though what that means, who knows.Go for it.
14:11
And so with that we worked on the language of what you've probably all seen of what we're
14:16
looking into, which is we have four kind of big pillars of stuff that we've looked into,
14:22
and those revolve around the history, what is it, like, literally, what were these places,
14:29
and could we tell that in a way where people could know more?Where are records and what issues
14:35
do people have getting them?What's the state of the cemeteries that were at these institutions,
14:40
and are there any other things about human remains that we should know about, or their bodies that might be buried elsewhere? Are there bodies in collections at universities or in
14:50
the government?And then based on this history, whatever we find out, what do we recommend is a
14:58
good way forward for people in Massachusetts to know about this history.So you jump all the way
15:04
forward, this went through all these processes and committees and everything in the legislature, and on the other end, the bill got turned into a part of the state budget, and it got funding, which is
15:14
why we've been able to hire CDDER, and with that funding, thanks to Victor for making it actually
15:20
work, we were able to sort of set this whole Commission up and come together.And what's special
15:26
about our group is that we are the first, as far as I can tell, talking to people around the world,
15:32
we are the first commission ever to be asked by a government to look into the human rights history
15:41
of these institutions where the members of that commission are a majority disabled.More of us are
15:47
disabled on this commission than are not.And where the leaders are disabled.And that has not happened
15:54
anywhere.It's very special.And so it gives us a chance to look into this history.And over these
16:01
last this last year and a half or two years, whatever it's been, CDDER has been digging into all of this and working with us to understand the issues and all of these working groups and
16:10
come back together.Our job, at the end of all of this, which is what we're getting near to,
16:15
is we have to go back to the legislature, go back to the senator and the senate overall, go back to
16:20
the house and the legislator, Garballey, and the house overall, go back to the governor and deliver
16:28
a report that says here's what we found and here's what we think you should do based on what we
16:34
found.So that's what we're kind of coming together to do now.And I think it's a good time to say, A,
16:45
commissions I think this is something to be really proud of, especially as disabled folks, where
16:51
a lot of the time we're told that we can't do things as well as other people or as fast as other
16:56
people.I have been told repeatedly by legislators that we got off the ground as a commission faster
17:02
than any commission they've ever seen, and we've done more work than any commission they've ever seen.We are doing great work and we're going to be able to tell people in the Commonwealth that
17:13
we've done great work, and ask them to do some stuff based on what we've done.That's something
17:19
to be really proud of, and I think a lot of people, just as they have up to this point,
17:25
taken very seriously the work that we want to do and we've had some really good supporters in this.I think we're going to have some good supporters as we go forward and say these are
17:34
our suggestions.So that's kind of a very, very brief overview of where we're at.And we have a
17:43
lot of options going ahead.We could ask them to keep the Commission going if we think there are
17:49
reasons that we should exist beyond the end of this.We can ask for funding on things and support
17:54
for things.We can ask for ideas to be taken up and made into law or done by the governor.We
18:01
can do a lot of things.We can't guarantee that they'll do them, but we have a lot of power to
18:08
say what we mean based on the amazing work that CDDER has done.And so now our job is to kind of
18:15
both say the very specific things that we saw that were wrong that we want to see fixed, and also see the big things that we want to see get done.So I think that's a sort of all of it in a nutshell.I
18:26
don't know if there are any questions.I'd be happy to answer a few questions now, and if
18:32
there are or if there aren't, the next step is I wanted to tell you what it will actually look like for us to tell the senate and tell the house and tell the governor and tell really the people in
18:44
Massachusetts what it is that we found.And there's a whole process to that that's actually going to make things easier for us.But if there are any questions, I would answer any that you have.Sister
19:05
Linda, go for it.Oops, did I lose you?She raised her hand and then may
19:13
have dropped off.Let's wait. >> KATE: She's muted.
19:19
>> ALEX: Oh, she's muted.Okay. >> KATE: Actually, yeah, she's muted. >> ALEX: Oh, there you go.Gotcha.Sorry.I was down too far on the screen.
19:28
>> Can you hear me now? >> ALEX: I absolutely can.How you doing?
19:35
>> Thank God.Okay.Sorry! >> ALEX: Every day.I was doing that earlier today. >> Look, I just have to say
19:45
how much I have learned from being on this Special Commission.I mean, I am astounded at all of these
19:54
dimensions that have been brought up, and, you know, if the State doesn't follow through with
20:05
what we're saying, I just don't understand.You know, because I have found that I mean,
20:13
I work on legislative advocacy and other groups, and so I know how critic al this report is and
20:24
how critical it is that each representative and each senator makes sure that there is follow up.So
20:34
I am behind you 100 percent.I think a question that I raised with, and I don't know who to go
20:45
to with this question, but I feel it might be on other people's minds and hearts.And the thing is,
20:56
with these current executive offers that Trump is throwing out left and right, how is this going to
21:05
impact not only this Special Commission but the state institutions within Massachusetts?And what
21:15
do we or who is going to be prepared to deal with that onslaught, or how can this group be
21:27
very clear in I don't know, either in opposing or affirming or but I just I have learned so
21:37
much from this Commission.I am most, most grateful to each one of you.Every day, I mean, I'm I have
21:44
a sister at Hogan, so and I'm up there like at least two times a week, at least, you know, so
21:55
that's a burning question that I have, and maybe that needs to be put on at the end, but I would
22:06
hate to have all this work declared like null and void because of the stupidity of a president who
22:17
has no clue what these state institutions are about, what they're doing and how they have in
22:27
the past operated, and what they're doing in the community, you know, that protects and defends
22:36
the basic human rights of the people who right now are in them.So that's a whole jumble, but
22:44
I just don't know where to go with that question, or if that could be put on a new as a new piece,
22:51
but I just don't want to see this report just pushed to the side and say, oh, we're not going
22:58
to pay attention, because of the ignorance of the leader in this country.And how these things are
23:08
going down.That's my fear and deep concern. >> ALEX: Well, so there's a whole bunch of
23:15
things here that I want to just take up on what you said.First of all, thank you, and I know we all feel that CDDER has really done just a magnificent job.
23:26
>> Yes. >> ALEX: It's amazing.Second of all, the way you asked that, I just want everyone to hear that, which is you don't have to have an
23:33
answer and you don't have to know how something is going to be done.This is the place where you could absolutely wonder stuff out loud.And we may not have all the answers but we're going to figure
23:43
it out, and that's the whole point of having a Commission is we're all here listening and we all have different skills that we can bring to this.I know that one thing that just goes
23:51
to answer what you were saying right away, it's the last slide on the other side of this when I get to say what we report back, is that there are other things we can do.One of the things I didn't
24:00
put on there but is totally possible and we should do, you've done a lot of legislative advocacy.One
24:06
of the things that we can do where you said every legislator should know about them, maybe we need a team of people when it comes out who just go up to the legislature and bring it to every legislator
24:17
and really sit down, meeting by meeting, and make sure that they look at it and they know what it says and that they understand what's going on.And that can be done one on one or in legislative
24:26
briefings where you get a whole bunch of them together in a room and you tell them, hey, this is what we found and this is what we recommend.And I think that's work that honors what's already
24:37
been done, and would be really important to do.So to your point about the broader kind of national
24:44
climate, I don't know how any of us any of us with our lives and work in disability are not afraid
24:51
and concerned right now.And we have a state that has enormous power and needs to know that it has
24:58
the power to shape mindsets, that we got to where we are, because people don't know these stories,
25:06
and I think we can speak to our officials here in Massachusetts based on our findings in a way that
25:13
says here is what you need to do to step up on our behalf.But I think some of this stuff is just,
25:21
it's so hard to even make it clear that past and present are related, and CDDER has helped
25:26
us do that.That I think that saying that now in really clear and powerful ways, this is why
25:33
we see today what we did in the past is going to be really important for us to get across.So
25:39
I see Emily's hand and I will stop talking. >> If I just may respond, thank you so much, Alex,
25:47
and definitely, I want to be a part of that. >> ALEX: Thank you. >> And I'm really good at it because I've worked from another systemic change organization,
25:58
and every Monday when I volunteer, that's basically what I do.I call each representative.I
26:05
call each senator, and I ask them to do such and such.So I would be very glad to be a part
26:13
of that.And any hearing that you have, I'd be glad to be present with that as well.And
26:22
also do what I can.So put my name down. >> ALEX: You got it.Thank you so much.So
26:29
much.Emily, did you want to go for it? >> EMILY: Thanks, Alex.Just very briefly.I
26:36
think you all have an opportunity to capture the important parts of history and the lessons
26:43
from that history and I would encourage you to state what is important to you and what
26:48
is important in protecting the rights of people with disabilities, and what may not have been optimal about institutional models, without taking current laws for granted.So
26:59
even if you feel like it's already protected in a law, like Olmstead or some of these ADA,
27:04
state it again.And that is how I would advise you going forward in the current
27:09
time of uncertainty with the political climate. >> ALEX: Thank you so much.It's sobering right
27:16
now, folks, and I think we probably saw this starting a little earlier than other folks saw
27:23
it and we have a chance to really step up now and to gather some folks around us.So let me talk for
27:30
a few minutes about how we're going to do that and what the kind of core thing is, and from there, again, please, like, as questions arise, let's go through them and if something occurs to you later,
27:41
just E mail, reach out, whatever it is, you know, Kate and Matt and I can really dig in to stuff and
27:47
no question no question is something you should keep to yourself because you think, oh, I should
27:54
already know this or whatever it is.We're working in an area where literally nobody knew this at the start.This is so deep.So saying I don't know is kind of the method by which we got this done.So
28:06
let's dive into the sort of how we're going to do this.If we can go to the next slide, that would be great.So on top of this very big report from CDDER, we have a chance as a Commission to
28:21
sum everything up.And that's important because a lot of people will read the big report but a
28:29
lot more will read the summary of what we have to say on top. And that's just based on the time they
28:35
have available and the kind of direction they're going to go in.But basically, at the top of all of
28:43
this we're going to write a summary and that summary is going to be our useful way to say the core things that we want to get across, the key points.And that's going to go on top and go
28:51
to all these people.It's going to tell them who we are.They don't know any of the story that we just went through, so it's going to say this is who we are.This is why we came about.This is the
29:01
work that we've done.This is what we found.This is what we would recommend.And the next slide, if we
29:09
can.Oh, can you jump to the next slide?Sorry.There we go.That's the one.Sorry.Pattern recognition
29:21
here.Don't go back.Sorry.So sorry.So who's this for?Like I said, it's going to go you know,
29:31
we deliver it kind of formally to I think the senate president and the speaker of the house.It goes into kind of their channels in the legislature.But in reality, like we've talked
29:41
about in earlier meetings, we're going to post it online.We're going to send it out.People will see it.It will be a public document.And we're going to say things in this that help people understand
29:55
what's going on.So some of this is just about educating them.We're going to take what we found in the CDDER report, what we saw in our work and we're going to get really, really clear and short
30:04
about it.So an example would be taking a lot of pages of really detailed, profound work, and this
30:10
is the hard part of doing this, but we would sum it up by saying people have had a very hard time
30:15
getting the state to give them records about their relatives who lived in institutions.That would be
30:20
a very simple thing to say.What we know is it took a lot of work to understand what was going on and
30:26
prove whether that statement is true or not.Now we can say that with a little bit of confidence.We know what's true.Next slide, please.There's a crucial thing about this.What types of things
30:41
can we say?The report is this detailed history that is meant to share facts with people.If they
30:49
want the kind of history book version of this, where they go, is this true or not, they can go
30:55
into the report.But our summary is actually not supposed to be that.That's not what summaries are
31:02
when you turn one of these in.Instead, what it is is it's more of an opinion and it's an informed
31:08
opinion.And what I mean by informed opinion is the report from CDDER gave us information,
31:16
and based on that information, we are now able to have an opinion about certain things and say
31:22
what we think should be done with the facts that we discovered.So this is a really wordy example,
31:30
and I actually picked an ugly, wordy one for a reason that I'll come back to in a minute.But
31:36
the example I have here is from a report in 1999, where the federal government, the U.S. government,
31:42
was looking into what happened to all of this gold and artwork that people had before World War II
31:48
that was taken by the Nazis.And it's a very wordy description here.I mean, they used words like the
31:55
cumulative facts and conclusions contained in this report.That's big words.That's a little heavy.But
32:02
then they say, basically, this report should evoke a sense of injustice and determination
32:08
to act.What they're saying is you're going to feel moved by this.This should make you feel upset that
32:15
something was done that was wrong, and that we need to do something about it.And that's what
32:20
I mean by saying an informed opinion.They're not just saying that randomly.They're saying that because they went out and looked for a lot of stuff and then they're saying,
32:28
based on this, you're going to be upset with what you see and we're going to have to do some stuff to act.So it's to say you can be bold here and we can be bold here and we should be bold here with
32:40
what we say.Next slide.So how it's going to come together, we've kind of talked about but I just
32:50
want to make sure it's all in one spot and if this is ever confusing, just reach out.Happy to talk
32:55
it through.But basically what's going on is we are getting lots of information and then we have
33:00
to kind of process that to get it down to these small statements.That's a lot of the work that I do anyway, so I find it fun, but I understand that most people do not find it fun.What I like to do
33:12
is take things and make them shorter, and so what we're going to do is we'll take something like the information CDDER sent to us and we're all talking about it on the whole Commission.That's the next
33:21
place it goes.And we make recommendations saying, well, it seemed like people had a really hard time getting records.So what are we going to do about that?What are good recommendations?So it seems
33:32
like these graves are not being taken care of.What are some good ideas for taking care of the graves
33:37
going forward that we could recommend?And when we hear those in these bigger meetings, those of us
33:42
in the working group are going to write them down and we're going to bring them into the working group and we're going to organize them so they're not flying all over the place.We'll put them
33:51
together and bring them back to everybody.And bit by bit, we're going to pull them all together, and
33:56
then we're going to share a draft with everybody of everything that we heard and we'll say, does it look like this?And the whole Commission at that point should definitely not say,
34:05
that's perfect.You should say, I think it's this way instead or I'd like to change it that way.And
34:11
we'll go through and change a lot of things.And at the end of it all, once we've kind of gone through
34:17
what we liked and what we don't like, we're going to take a vote on whether or not we're at a place
34:23
where we want to share that final summary.And that's what we're going after for these next four
34:28
months or so.So it's going to take a lot of steps, but at the same time, this is the good stuff that we get to do.All right.Next slide.There are basically four kinds
34:41
of things that we want to say on this.The first is what we did.Because we did a lot.CDDER did a
34:48
lot.So we're going to want to pull together a list of things we think are important for
34:53
people to know.One of the big ones is we got the state to share some cemetery records.And
34:58
that's great.Like, legislators can ask us about that.People who work in government can say well, how did you get them to share it?And how can we share more?And is it limited what we can do?But
35:09
right now, we can just say what we did.Very simple thing to do.And that's good to do.
35:14
We can say what we found and how we feel about it.That's more of like we found people that have
35:20
a hard time getting records and we're loved ones and we feel that that's not right.We can say those
35:25
sorts of things.We can say what we think people need to know, what they need to do and who they
35:33
are.So based on what we've seen, an example would be we think schools should teach this history in
35:39
Massachusetts.That's a good thing to be able to tell people because when they read this story,
35:45
some parts of it are going to make them excited and some parts of it are going to make them upset.And we want to be able to say, okay, if you're excited, we want to do these things
35:55
and if you're upset, we should do these things.In this instance, we could teach more about this.And
36:01
I think the big thing is that all of these things are kind of connected.So you don't have to worry when you throw out an idea that it has to be perfectly said or perfectly phrased.We're going
36:10
to find that there are all of these connections and later on, Kate's going to share something that I think shows how a lot of this is connected.And we'll do a lot of that piecing together.But an
36:19
example would be when you mash all this stuff together, one example is people don't know about this history so they don't know why it's such a problem that other people can't get records and
36:28
we could say they need to know more about that, and that's a whole bunch of things mashed into one statement.So we have kind of four big areas that we're going through.Next slide.So examples
36:42
of what else we'll do.We probably would want to reach out to the senator and the representative
36:48
who made this possible and say, hey, once you've read the report, do you want to add a letter on top of this whole thing that tells the people you work with how you feel about what you found?And
36:58
we might want to include that in things.We might want to do a version of this that's very short
37:03
where, when we release it and we send it to the legislature, we say, hey, if you're a journalist,
37:08
you should know these things about this and share a little bit in what's called a press release,
37:13
and what Sister Linda said.There are other things we can do that if you think we should do it,
37:19
bring it out and we'll take a vote on it and talk about it and do whatever else we need.But maybe we need to go up to the state house and talk to people.Maybe we need to meet with leaders from
37:27
DDS and DMH and health and Human Services and just say hey, this is what we found.Here are
37:33
some things you could do based on this.Right?We're going to want to educate people and share in clear
37:39
ways.So I have two things I'd love for us to discuss about how to do that report.Before we
37:50
do that, I know that was, again, a very fast run through of things.Does anybody have any
37:57
questions about kind of what the shape of this would look like or what we're supposed to do?Or
38:04
why we're doing it this way?Okay.If questions do come up, feel free to ask them.I would like us
38:15
to talk about two things that are going to really help the report working group know how to do this
38:21
best.Next slide, please.The first >> Reggie had a quick question.
38:28
>> ALEX: Yes, Reggie, go for it.What's going on. >> [Audio indiscernible].
38:34
>> ALEX: You and Anne.You testified.You were the first two.
38:42
>> Right. >> ALEX: Yes. >> Okay. >> ALEX: Yes. >> Just want you to know that. >> ALEX: Hey, there's not a day goes by that I
38:50
don't know that.And that's what I meant before by the fact that for all of you would have questions,
38:57
there are members on this Commission would have been here from the beginning, right?There are people would have deep knowledge about this.Reggie, you have some of the most,
39:06
because you also experienced this and lived with this, and I think when we talk later about what do
39:12
people need to know and why, I would really like your thoughts on that.I think it's important that
39:19
we lead with what you think is the right thing to say.I would like us to vote on a couple of very
39:30
straightforward things that are very important for how we come up with all of this.The first
39:38
has to do with plain language.We've talked a lot about plain language as a Commission, which is to use simple words that are clear and direct with people so that more people can
39:49
understand what we're saying because big words can get really confusing.They sound nice, but they can
39:55
get confusing.I think that it would be in our best interest to write the summary that we're putting
40:05
together in plain language, because I think that a lot more people would be able to read it.But
40:12
I didn't want to jump in to that without asking and taking a vote because there is one big down
40:19
side I see to plain language, which is it's very blunt.And Emily talked about this with writing the
40:26
plain language with the team from CDDER for the report, is you don't really, when you use very
40:34
short words that are very direct, you don't have a way to hide the things that are really hard to
40:40
say in nice words.They come across as hard things to hear and they're hard to say.And so it could
40:48
be a harder thing for people to read emotionally when they come across it.But maybe we could put a
40:54
warning in there or something that says, hey, this is going to feel a little bit hard to read.But
40:59
I don't think we should assume as the report crew that this is a given, and I wanted to open
41:09
that up for discussion.So for that Kate, I have no idea how process works.I would turn back to you.
41:17
>> KATE: I think first and foremost, if there are strong thoughts, recommendations, suggestions,
41:31
anything that we missed in the reasons why we may or may not want to do it, I'd like to get that
41:38
out on the table first before we take a vote.So are there questions, comments, concerns?Sam.
41:47
>> I guess one thought I have, I'm definitely pro having a plain language summary, but I also
41:57
think that, like, there's some aspects of recommendations we might want to think about that are incredibly technical that have to do with, like, you know, specific laws or,
42:07
like, introducing specific laws.And I worry that plain language could collapse that a
42:14
little bit but I'm not suggesting we don't have a plain language summary.Just maybe have that in addition.It would be my thought. >> Okay.That's an interesting way to think about
42:26
it.Bill, I see your hand. >> Yeah. I would agree.I read in a draft of the report or something the plain language first, and I think it
42:37
made all the key points, but I think if you're going out to the public that Alex mentioned,
42:43
legislators, et cetera, there has to be this kind of more depth.They will look at it, they will look
42:52
for that kind of validation.That's the world in which they live in, footnoting, things like that,
42:59
sources.So I think to validate the report, it needs something beyond the plain language,
43:08
but I think having plain language represents who we are as well, too.So it can't be either/or,
43:17
it's gotta be both in my opinion.Thank you. >> KATE: All right.It sounds like we have both
43:28
Bill and Samuel suggesting that plain language and report language are both important and both serve
43:38
a purpose.Are there any other thoughts? >> Yes.
43:45
This is Mary Mahon McCauley.I'm joining via audio today. >> KATE: Hi, Mary. >> Sorry I was late.It was at the 9
43:51
1 1 Commission before this.But anyway, I like the idea of having things written in plain language
44:02
and I do understand that it can sound quite maybe a little more bold or abrupt or stronger due to
44:10
the fact that you're not using a lot of terms to kind of soften it.So I think that's critically
44:20
important.And I'm you know, I'm I would like to see it written in plain language.But I also
44:27
agree, and, you know, that would be like a summary of everything that we've done.And then,
44:34
you know, what I think as very important as well, as others have mentioned, you know,
44:41
partially there's another summary that's written at a different high level.And what I mean by that,
44:47
in more of an academic legal kind of manner, that uses other terms that, you know, legislators,
44:55
educators, legal folks would use, but especially on the recommendations.I think that, you know,
45:03
could have a plain language document as well of what we're recommending, but, you know, some
45:09
of the recommendations may be, you know, are we discussing line items?Are we discussing executive
45:16
orders?Is there particular laws or things that we want to look at, so, you know, it's important,
45:25
especially for that recommendation piece, to be in, you know, the plain language format, you know,
45:32
as well in a way that, you know, we're discussing the possibility of a new bill that's going to be
45:39
presented to legislators.So I guess I'm agreeing with both.It's almost like I see an advantage
45:46
of both sides.Like I see an advantage of hybrid meetings, you know, to meetings that we can go to,
45:52
and meetings that we can be virtual.I like kind of both sides of that.So I would put
45:58
a plug in for both plain language, as well as more technical terminology in another report.
46:06
>> KATE: Thank you, Mary.Sister Linda. >> I would also want to include some of the
46:16
stories, protecting identities of people, because I know, in the work of legislative advocacy it is
46:29
the real life stories that touch the hearts of those legislators and say, well, we can change
46:38
this.We can do something about it.It will go along with whatever the recommendations that we
46:45
have.That's going to be the fire, so to speak, that will kindle in the state legislators, why
46:57
we need to have these changes.And so that's my recommendation, that we have at least some real
47:08
stories protecting the identity of individuals.But it's and I say that because I just got through on
47:18
Monday sharing a story that really happened with the state senators.And the response was
47:26
I will vote for that as a result.You know?So that to me is really key and it goes along
47:36
with it.Supplements the hard work that this report is trying to lay bare and that it has
47:44
taken seriously the, you know, what we were formed to do and why we did it in
47:54
this way.So that's my recommendation.Thanks. >> KATE: Thank you so much, Sister Linda.Alex. >> ALEX: Awesome.Thanks, everybody.So I don't know what the language needs to be or if we
48:05
even need a vote on it but it sounds like is there a way to say, like, we should do plain language,
48:13
where possible, it sounds like, is what folks are saying.Wherever possible, use it.There are going to be some instances where there aren't.And the prioritize stories
48:22
the way that Sister Linda is saying.I don't know if we Kate, do we need to vote on it?Do we just
48:29
need to know it and kind of go with it? >> KATE: I don't think I don't know that we need to vote on it.I think at this point it sounds like we definitely do want to go in the
48:44
direction of using plain language where we can.I'm wondering, though, after Bill and Samuel's point,
48:51
as far as the way legislators are looking at this report, that for the summary itself and only the
48:59
summary, that we do both reporty type language and plain language so that everybody gets the right
49:10
feel for what we're presenting.So I don't know, Emily or Jen, if you have any thoughts as well.
49:23
>> EMILY: I think you can frame this as instructions to the report working group on style,
49:31
and then keep this in mind when you review drafts and give continued feedback, knowing
49:37
that there are some key pieces of information that need to be accessible in plain language,
49:42
and some that need to be written in a way that legislators and other groups can specifically act
49:48
on them.So I don't know that you need a vote at this point.I would see this as, you know, consideration you want that working group to hold close to how it is supporting the larger
49:58
commission in the drafting work that it is doing. >> KATE: I think that's a wonderful way to look
50:04
at it and I think that will help us through the process and make sure that the report is as accessible as possible.All right.Excellent.Thank you, Alex.
50:14
>> ALEX: Thank you.Second thing may not also need a vote, I don't know,
50:20
but there's one more thing.Super important, super simple and straightforward, but not so simple and
50:26
straightforward.There are two ways to talk about disabilities and people with disabilities.One way is to say people with disabilities.The other is disabled people.The report should do one
50:37
or the other.They have a different meaning.The people who use them usually mean something a little bit different when they say it.It's best to sum it up as I can when people say
50:48
we are people with disabilities, the goal there is to really say people first, like, we're human
50:54
beings right in front of you.When people say we are disabled people, disability first language,
51:01
they're saying, look, my disability is part of my identity, so much so that I'm going to it's
51:06
going to be sort of confront you with that fact as the opening thing because we're not going to get around it.I just wanted to make sure that when the report crew is meeting,
51:17
that we're using a consistent language that people feel comfortable with, and I wasn't sure what the
51:24
best choice there might be, and I thought it should come up somehow.Kate, it's all yours.
51:32
>> KATE: Sure.From my own personal point of view, I think that we make our point as a commission of
51:41
individuals with disabilities better if we're using people first language.It's a subtlety,
51:50
but I think it's a subtlety that's important.And then just making sure that we're recognizing that
51:56
when we're providing the history, we may not always use people first language
52:03
because historically speaking it was not necessarily people first.That's my thoughts.
52:10
>> ALEX: Brilliant.Right.Right. >> This is Mary Mahon McCauley again from MOD,
52:18
and I would absolutely want it to be people with disabilities language, with the first first.But
52:29
in some references as just mentioned, it may come out a little differently but for the most part it
52:38
should, in my opinion, be absolutely people with disabilities, or individuals with disabilities.
52:46
>> ALEX: Fabulous.Okay. >> This is Reggie.I think whatever works,
52:53
the best way, the best language, but the most important is to make sure to know where people
53:00
know where the records are because people are going to still ask about that and we need to focus what happens in this state right here in our backyard.We need to take care of our own.
53:11
>> ALEX: Reggie, can I ask, and I agree entirely, can I ask, when you use when
53:17
you talk about disability, do you say people with disabilities more often or do you say
53:23
disabled people more often?Or do you not >> I say with disabilities.I say repeat because
53:31
get to say what they're supposed to say.A lot of times people [audio indiscernible] I think
53:43
there's value in a lot of ways. >> We lost you for a second.Oh,
53:50
there you go.You're back.Okay.Okay.Bill. >> I'm not going to I don't have a disability,
53:59
but I will just note many people use them interchangeably just to have a different
54:05
construct grammatically and for space, and it's just interesting to hear the slight difference,
54:13
which I really hadn't thought of.Thank you for bringing it forward.But I abstain on this for the reason I said. >> ALEX: Totally.That makes sense.Thank
54:21
you.Samuel? >> Yeah. I maybe differ from other people a little bit on this.I am disabled,
54:27
and I prefer disability first language.I think it's more bold.I think it claims disability
54:33
as an identity rather than and kind of like a political category as opposed to just saying,
54:42
I don't know, it feels more like direct to me.And I prefer directness.But that's just my opinion.
54:52
>> ALEX: Can I gauge your sense on if we ended up using people with disabilities,
54:57
is that a cardinal sin for you, or is that >> It's not a cardinal sin for me, it's just that's my preference personally.I don't think it's bad, and I see why people feel differently.I just
55:09
have a different political opinion about it. >> ALEX: Thank you so much.Linda.
55:15
>> Yes. I just want to say I really appreciate this discussion, K one of the things that I just thought of that just
55:27
popped into my mind is because this language has not been used, that can also be the reason for so
55:38
many human rights violations.You know?And I think that needs to be stated.So at what point did the
55:47
State of Massachusetts begin to look at things differently?Because it's commodifying people with
55:58
disabilities, you know, and I want to be very respective of how do people on this Commission
56:09
want that to be voiced and named in the document?I think that those voices are the most important,
56:20
but I just wanted to bring up to that point, I said oh, you know, it's probably because we didn't
56:27
use that language way back that people were just written off, truly demoralized and pushed aside
56:41
and not respected at all.I think it's that kind of attitude that shows up also in the way we use our
56:50
language.I just wanted to put that out there. >> ALEX: Absolutely.And it sticks with you
56:56
when you get called, it sticks with you for the rest of your life.So I hear you loud and clear,
57:01
and I and I trust your wisdom on this.What do you got?
57:08
>> I'll go with the person first but I really like to go with difference
57:15
abilities instead of disabilities. >> ALEX: Oh, that raises a new term,
57:23
folks.Can you say more why you >> So many people around with things that
57:31
you can't see, with intellectual disabilities that you can't even see.You don't even know that they
57:38
have different abilities, but they do. >> Hi.If I could say something else.This
57:50
is Mary again.I just want to add, you know, I'm over 60.Let me just say that because that really
57:58
is part of the whole people with disabilities mindset.And some of that, when that was really
58:06
such a major way to say things within the community, and I think most of us agreed,
58:14
you know, there was a lot of like let's say in a medical setting, people would say, you know,
58:23
the spinal cord injury in Room 10, or, you know, the they're just you know, the schizophrenia,
58:34
the schizophrenic in Room 8, or whatever, and it seemed very disrespectful because they weren't
58:40
even saying a person.They were just calling a person a diagnosis, which was very disrespectful,
58:48
and, you know, really harsh and not a nice way to refer to a person.But, you know, I do agree,
58:56
you know, disabled person, you know, I do also identify strongly as a disabled person.So, you
59:02
know, I have gone back and forth more so as far as different terms being used, you know, I guess
59:10
I just wanted to re state myself, and I think I would be okay with that.I think we can kind of go
59:18
back and forth and maybe somewhere in there we can just weave in differently abled, but, you know, I
59:24
think we do also have to say disability, actually, so people know I think they understand that word
59:31
as the legal sense of what is disability, like the definition on the ADA or other places.
59:38
>> KATE: Okay.So I think again just like the other question about plain language,
59:44
I think this is going to be how we direct the report writing group to choose language
59:51
that fits the piece that we're working on, and ensures that everyone is comfortable with how
59:59
the language is presented, so the reporting group will definitely take that under advisement as the
1:00:06
report gets assembled.So it's a little bit past 4.So if we could take a five minute break and
1:00:15
come back around 9, 10 after. >> ALEX: Thanks, everybody.
1:00:46
[Five minute break].
1:02:23
[Human captioner standing by]. >> KATE: I know there's people
1:06:52
still slowly coming back, but in the interest of time, and a lively discussion,
1:07:00
I'd like to have Alex share out some of the notes from the report working group that met earlier this week.So Alex.So we've put together some examples of potential recommendations.Some
1:07:16
of the steps that we'd need to put into place in order to make those recommendations
1:07:21
happen.So Alex, take it away for a moment. >> ALEX: I will take it away for a moment.So
1:07:29
we had a really lively conversation.It was really it was really good to start to think about how do we make recommendations for this report, and I just thought some of the notes from the what
1:07:40
members raised were really important because we ended up talking about why is this meaningful today.A lot of this stuff is history.Some of it is history where it meets people who are
1:07:50
directly trying to get information, but it seems like it has a bigger meaning today and
1:07:56
try to connect that.And so this is a three bullet points from the folks on the crew, but it shows
1:08:03
that we're honoring the lives of those who came before us to do this work.It shows that education
1:08:10
is needed in many ways and it shows that people need to know these things because we're repeating
1:08:16
the past right now because we haven't been able to get to share these stories up to this point.
1:08:21
And I just thought those were really profound, and then we spent, like Kate was saying,
1:08:27
a lot of time talking about how it seems like a lot of the steps that we might recommend are kind of interlocking and one leads to the other and it's helpful to kind of look at what those
1:08:38
look like connected to each other so we can break them down a little bit more, because it can get a little overwhelming.That goes back to you, Kate. >> KATE: Okay.So next slide.And next slide.There
1:08:55
we go.Perfect.So we did talk a little bit about how some of these recommendations, as Alex said,
1:09:03
work hand in hand, and we wanted to come up with some road maps to think about where do we start,
1:09:10
where what is our intended end point, and ensure that we don't lose steps in the
1:09:18
process.So in discussing museums directly, one of the things that we talked about very
1:09:25
deeply is that not necessarily creating museums and stating that creating a museum is the thing,
1:09:33
but creating opportunities for education, but we know that starts with securing funding,
1:09:38
and it goes to organizing and managing collections.There are a lot of important
1:09:44
items out there that people should have access to.Then collaborating with stakeholders, and
1:09:52
decision makers so that we have the opportunity to connect with the agencies and either figure out if
1:09:59
we're building an actual museum, are we building a virtual online museum?Are we building an education
1:10:08
network?And then the final product of what does that look like and what does it mean, and how do
1:10:14
we share it with the public.Next slide, please. And Samuel is going to talk a little bit
1:10:23
about the road map for access to records. >> Hi.So a lot of this was informed by my work as
1:10:32
a reference archivist, so I'm dealing with a lot of folks probably on a weekly basis who are asking
1:10:40
about access to these records, and these were some of the suggestions I came up with after talking to
1:10:46
some of my colleagues and kind of thinking about how we might respond to these issues.Some of them,
1:10:57
I know some folks in the working group expressed concern about privacy, and that's something that
1:11:04
we take really seriously at the archives, too, which is kind of why one of my recommendations
1:11:10
was to have records access for these records to be more like prison record access, which is,
1:11:18
you know, typically they're restricted until the death of the person.A person who's requesting it,
1:11:25
you know, usually gives us a reason why they need to see the record like, you know, I'm a family member of this person, I'm doing my genealogical research, I'm doing historical research on,
1:11:34
you know, this type of crime, and then we release it to them with redactions as appropriate,
1:11:41
kind of determined by archives usually redacting things like, you know, things that are sensitive
1:11:48
medical information, things that are, you know, names of other people who might be victims
1:11:55
of a crime, stuff like that.So that's kind of one of the things that I'm thinking about with records
1:12:01
access is kind of to take a middle road that keeps in mind the privacy concerns of these but,
1:12:08
you know, is not like, you know, totally public on family search, that type of thing, which would not
1:12:14
be appropriate for these records.So that is some of what I am suggesting with the Mass general law
1:12:23
changes.Another thing would be to kind of iron out a clear work flow with DMH and DDS.One barrier to
1:12:35
access for these records has been that we can't confirm or deny whether Mass Archives has a record
1:12:44
and that can be I have had some instances where people, you know, have gone through the court
1:12:52
order process, have done all the proper channels and then it turns out that, in fact, we don't
1:12:58
have a record, and no one knows where that record is.So that can be really challenging for people.
1:13:05
The idea of proxies is kind of one possible way to get around some of these thorny issues around the
1:13:19
laws at the moment and kind of allowing archives to have a little more control over the records
1:13:26
that are in our holdings.So specifically that are in our archival collections that have been
1:13:33
deemed historical rather than active records. The other part that I was thinking about as well
1:13:41
is another way to do this would be to potentially have an embedded archivist.So, for example, the
1:13:52
courts and the military have their own archivist that's in house at Mass Archives that's, you know,
1:13:59
hired by that agency that kind of stewards their records, gets them to Mass Archives,
1:14:07
kind of acts as a middle person between these two agencies, so that would be another way to
1:14:13
kind of resolve some of these questions.So sorry, that's a lot to say.That's just some
1:14:20
of my thoughts based on my positionality.I obviously welcome feedback, but that's an
1:14:27
example of some suggestions we might have. >> KATE: Excellent.Thank you, Samuel.That
1:14:32
was a great encapsulation, and this is one of our bigger, heavier hitting sections.Andrew,
1:14:39
I see your hand. >> Yes. Thank you for that, Samuel.I just had a quick follow up on your proposals.For
1:14:49
the prison records, you said that access is immediate after the death of the individual.>>
1:14:55
So the patron would reach out to us.They would need the name of a person,
1:15:01
and then they have to present a death record and obituary, some proof of death of the person,
1:15:09
and then we can usually we scan that record and then make a lot of redactions as necessary,
1:15:17
you know, in compliance with other laws.But yes, they are open after the death of the person.
1:15:26
>> Okay.My only >> In a sense.Not totally open, but, like, you couldn't go into Mass Archives and get a whole box and look through a whole box of
1:15:33
prison records unless it's like, you know, from, you know, many, many hundreds of years ago.But,
1:15:39
you know, if it was someone who was like say in the 1920s, that would be how we would look at it.
1:15:45
>> I guess my only question, and I don't want to side track us too much, would you bump up into any HIPAA restrictions who have it because there's a 50 year requirement there
1:15:56
and because DDS and DDH are covered entities? >> So my understanding, and this is not my area
1:16:04
of expertise, but my understanding is that HIPAA pertains to active medical records and
1:16:12
not to inactive medical records.So things in the archives have been deemed inactive
1:16:18
have been deemed historical, but that's my understanding.I could be wrong about that.There's more research to do there. >> All right.Thank you.
1:16:27
>> KATE: Thank you, Andrew.Next slide, please.And our other category that will be part of the report
1:16:38
is talking about cemetery work and cemetery restoration.We created this road map thinking
1:16:46
about first putting up cemetery signage so folks know that cemeteries are there and they exist, and
1:16:53
give them some historical information about the institution and then sharing of best practices,
1:16:58
what happens when you learn that you may be the caretaker of an unmarked cemetery.How do
1:17:04
cities and towns connect with resources and the agencies and the archives.Providing consultation
1:17:11
as a commission to cities and towns about how you restore these cemeteries.And again,
1:17:19
stakeholder collaboration and support, having everyone working together to support cemetery restoration as opposed to hoping grassroots efforts will step in.Next slide, please.And I'm
1:17:37
going to ask Alex to continue the conversation and talk about the impact of our work on tomorrow.
1:17:49
>> ALEX: So a lot of this is brainstorming from here.You know, the last stuff we were just looking at just shows that there's connected stuff that each of these things, we can sort of break them
1:18:00
down.If you have a big idea, we can sort of look at it and take it apart, and some of them are really complex, but we can get there.And then bringing them back, we can raise other questions,
1:18:11
like the last question is really good of like where does HIPAA, which is medical privacy law, come into all of this because some things are really protected for good reason and, you know,
1:18:20
we have the time to figure this out in the coming months.So I think we're all talking about for the
1:18:26
records for the work group to kind of know how to start to structure some of these things, to just
1:18:34
hear out from everybody here, especially those of you who aren't doing the records working group,
1:18:40
to really chime in now of what you'd like to see us accomplish.What do we want to get done before this phase of our work is done?Is there anything that you want us to be saying
1:18:50
that's really top of mind sort of like what Sister Linda was saying about both how we do what we do,
1:18:57
like maybe we need to add a step to this where we go talk to legislators, and also what we say
1:19:03
with what we do.Hey, words matter here and they're really powerful.And they set up mindsets for how
1:19:09
we think about disabled people.Those kinds of things.Sorry.Tipped my hand.I often use
1:19:15
disability first language, but yeah, anything and everything, just a chance for us all to
1:19:23
keep talking I think the way we were before but really around what do we want to see get done.
1:19:34
>> This is Mary again.And, you know, being on the records working group, I've learned a lot.And,
1:19:52
you know, thank you so much to CDDER to everyone on this commission.But the you know, I think a
1:20:01
better, consistent process in getting records, it seems that, you know, some individuals'
1:20:13
family members are trying to get records for one person, one thing is happening, and another person
1:20:20
something else is happening, possibly because they were in a different institution, or it's
1:20:26
another decade, or so, you know, I believe the consistency would be helpful.And I have a family
1:20:36
member that was in Medfield State Hospital, and although I was going to do this a few months ago,
1:20:42
I haven't.And they were there off and on in the 1950s and '60s with a lot of electroconvulsive
1:20:49
therapy of quote unquote shock therapy, which it was referred to more often then, but,
1:20:55
you know, I'd at some point, I'd like to get those records, and I can prove they're a family member,
1:21:02
and I was actually the executrix of the estate and I have that paperwork.So, you know, and I mean,
1:21:12
I think that since this person died in 2003, that I was the executrix, and that I could
1:21:20
prove those things, I think I would get the records, everything but the medical records,
1:21:26
possibly, but, you know, so consistency across the board with getting records and family members
1:21:33
not having to wait extensive lengths of time, you know, maybe the 75 years might make sense,
1:21:40
and certain circumstances, but, you know, I don't really understand why a family member couldn't get
1:21:46
something sooner.So I guess that's it. >> ALEX: That's just so, you know,
1:21:53
you fight for months to try to find the right words for something, and that's really I love how
1:21:58
straightforward that is, a better, consistent process.It's not lengthy.And you're right.As
1:22:04
someone who's trying to get records right now, who I know is nearing the end of the probate process with the court, and the judge randomly asked for a two page letter of why he wants the records about
1:22:15
his deceased relative.And it's just he called and says it's cruel, like why should I have to justify that?It's arbitrary.It came out of the blue.And yet he can't get it unless he writes
1:22:26
that letter because the judge won't approve it.And that's not fair or right.And so
1:22:31
>> No.It should be the same from one person or another.Yep. >> ALEX: Yeah. Equality in this.For
1:22:38
family it's one track, like you're saying, and then for other folks, one that may be different
1:22:44
but is organized.So thank you.Sister Linda. >> I have a question that I thought of.As
1:22:56
a result of this report, who is going to oversee the recommendations will be implemented, and if
1:23:06
not why, how will this be held accountable?That's always my question when it comes to issuing a
1:23:16
report so that the report ends up on somebody's shelf and forgotten about, you know, like what
1:23:24
are the ongoing provisions to make sure that the implementation is carried through.I don't know if
1:23:36
you understand my question, but I think it brings this Commission really full circle, you know,
1:23:47
and how serious we took the mandate.Well, if it's going to stop and, you know,
1:23:56
what good of all the work that we have done.So that's my question,
1:24:02
I guess, onion going accountability on how these recommendations will be put forth, or whatever.
1:24:12
>> ALEX: It's a profound question we're going to have to all talk about and take up,
1:24:18
because just as an example for everyone, because it comes from this history, in the 1990s,
1:24:24
some of you know this, some of you may not, but in the 1990s it came out that the Fernald School and
1:24:30
the Radtown State School had many years earlier in the 1950s used radioactive material on the people
1:24:40
on the kids living in the institution.And they didn't tell them that.They told them they were going to be part of something called the Science Club and later on in the 1990s it came out that
1:24:50
this was done.It was done by Harvard and MIT and Quaker Oats and the State Government, Federal
1:24:56
Government.And all kinds of people got involved and there was a commission just like ours and they made all types of recommendations.And this got the president to act.President Bill Clinton
1:25:06
got up and apologized for what the government had done using radiation for people.But I went looking
1:25:12
a few months ago and the governor of Massachusetts never apologized.The state never followed through
1:25:19
on the recommendations.Nothing was done.We have some examples of how you can avoid that happening
1:25:26
and make sure that things are done.And I think the very simple one, but it's one we should consider,
1:25:33
is whether or not the commission needs to keep going in some form afterward, empowered to do
1:25:38
some kind of accountability, and to say hey, who's getting stuff done and have you gotten
1:25:43
it done.And I think we could ask CDDER to look into ideas or recommendations for what we might do
1:25:50
to get accountability, and also we could probably check with the senator and the representative who
1:25:56
supported this and say what do you think are good ideas for accountability.Because I think you're
1:26:03
right.It's one thing to put a report out.People put it on the shelf.It's another thing to really make sure that the work is getting done.And some of these things have a lot of steps to get done.So
1:26:14
I really value that.But I think a very serious thing we need to consider is there a second phase
1:26:19
of this Commission that exists down the road?And not everybody has to stay on that Commission,
1:26:25
but like something for accountability. >> Drew.Andrew, you there?
1:26:34
>> Yeah. Sorry.I was looking for my unmute.Andrew Levrault, that was sort of the road I was heading down is what Sister Linda
1:26:41
mentioned and maybe we look at a model, I'm on the permanent commission on the Status of
1:26:47
Persons With Disabilities maybe we look at that as a model where we have one executive director who's a state employee in a larger commission with working groups but we have somebody there who can
1:26:56
apply for grants to look at some of these issues or additional funding or things like that.So
1:27:02
something to consider as a recommendation. >> ALEX: And maybe one of the things we should do,
1:27:08
I mean, that commission, that's kind of an awesome model, is maybe along with sharing what that does
1:27:13
in a meeting, maybe next month's meeting or something, would be also just to hear from
1:27:19
part of the point of having all these members on this commission was to get everybody together so that we could hear from folks, is if that sounds like a good to the DDS and DMH folks on this call,
1:27:31
like I understand that to implement some of the things we're going to ask for, to do them, and get them done, there's going to be need to be money and/or time from the state.And we want to
1:27:43
be sure that we're advocating for that in a way where it makes it possible for them to do the changes that we're asking for, not just saying the phrase for those of you who may not be familiar
1:27:54
with it, the phrase unfunded mandate is a really ugly phrase in politics because it
1:27:59
means you told someone to do something, but you didn't give them any money or resources
1:28:04
or time to actually get it done, and that's not usually a good way to make friends or to
1:28:10
make change.And so I think we should probably talk very seriously about that and maybe the
1:28:17
records or the report group can come up with some stuff and CDDER can come up with some stuff to think it through. >> Great.Thank you.
1:28:26
>> Bill. >> Yeah. I think anything we decide to do needs to be very focused on something that's doable.Part
1:28:36
of that may be continuing this to give a platform for the many things that might be recommended, or
1:28:44
would be ideal, but I think really want to focus on some concrete outcomes.We do throw it around,
1:28:51
you mentioned the radiation study.My bookcase behind me has lots of studies on disability
1:29:00
issues, raised all the right issues and they're 20, 30 years old, and they still exist.You know,
1:29:08
one or two doable things.The last one might be continue the commission to look at those things we couldn't address but something concrete to move what we decide are the one or two things most
1:29:20
critical and doable.That will give us the oxygen, too, to keep going, in my opinion and experience.
1:29:27
>> Bill, can I ask just a follow up question?Do you have a sense of what one or two of those things might be?I'm not holding you to it, but something
1:29:36
specific and concrete that we need to do? >> I would defer to the group since I've only
1:29:46
been on the Commission the last, you know, six months.So looking through the report and stuff,
1:29:53
what is the heart and soul?There's records.There's cemeteries.And then there's, to me, the sense of,
1:30:03
you know, I don't know how to put it into concrete terms, so I've discussed it with you.How do we
1:30:08
keep that history alive so we don't repeat it.And it's not just for getting records.It's
1:30:14
about dehumanizing people and all of this, and I think, as was stated by the sister at the start,
1:30:24
we could be on the brink of those kind of dissents again.So to me, how do you make this a living
1:30:31
activity that history living contemporary is the mission.If it's just about getting records and
1:30:38
I'm not saying records aren't important.That's so vital to people but it will get dismissed as
1:30:43
some kind of clerk of the courts type of thing, you know, nobody votes for clerk of the courts
1:30:50
unless or register of deeds, why do we vote for that, you know, you don't deal with them unless
1:30:56
you're selling your house or something.But we know what's important.But it's not.And it's a
1:31:01
means to raise this issue of dehumanization of people with disabilities.That was such
1:31:07
an intrinsic part of the American society, still is in some ways, and could be again.
1:31:13
>> Thank you. >> You know, that's a mouthful.How you achieve that, maybe that's where we sit down and think of some of that.And ideally
1:31:22
we get in a concrete accomplishment that does that.It will take some thinking, I believe.
1:31:29
>> ALEX: But it's a great specific like it's a way to get specific.People don't know something, people need to know it.If they don't know it, they're going to do the same things that were bad
1:31:39
in the past all over again and then the question for us becomes how do we get people to know what
1:31:44
they don't know, and there are lots of options for that so I think getting specific about that folks,
1:31:49
thoughts today, here, now, that's good to throw out there.Like it should be in the public schools,
1:31:55
or there should be money for speakers, or there's whatever it is, I don't know.But Samuel, go for it. >> Yeah.
1:32:01
I think one way to keep that piece from being dismissed is what you said, Bill, kind of a clerk
1:32:10
of the courts problem is I think tying it back to, you know, if we don't understand this history,
1:32:18
which the records are the only way to factually understand history, right, because that's,
1:32:23
you know, what we have is the historical record.I think that can be like, you know,
1:32:31
a powerful way to kind of tie that record access piece in to, like, that is, you know, one of
1:32:38
the main ways besides, you know, conversations with folks who experience these institutions to
1:32:47
understand this history, and especially when we're talking about, you know, history where the people from those institutions are now long deceased and cannot tell their stories to us.So I think records
1:32:59
access is key for that, for understanding that dehumanization and understanding,
1:33:04
you know, the ableism that happened. >> ALEX: For folks who haven't spoken or
1:33:18
shared anything, do you want to share anything in about what you think we should be doing or how we
1:33:25
what kind of thing we should be saying in the report that we need to do to educate people or to let them know this story?Records point is a big one Evelyn, yeah, go for it.
1:33:47
>> Well, I've learned a lot from the Commission but me, myself personally, I didn't even know I
1:33:55
could look at my records until two years ago, and I grew up in state custody, and I went through
1:34:01
residential foster home, therapeutic foster home, in and out of hospital and I didn't even know that
1:34:09
as an adult I had access to information that was not given to me because my family was my
1:34:17
parents weren't around and I didn't know until I started working for DMH as an intern that I even
1:34:25
had a file under my name, my maiden name, and I learned bits and pieces about my life.I didn't
1:34:34
read it all because it was too traumatic.I just read, you know, my education, where I was located,
1:34:44
and what my diagnosis was because I didn't even know that.I just knew it as an adult.So for me,
1:34:50
it's really important that we're able to access information when we grew up DMH and DCF,
1:34:58
state custody back in the early '80s, '90s.So I've learned tremendously about with this whole
1:35:07
Commission and how to ask permission to get some of my records.Even my hospital records.I don't
1:35:17
have none of that.And how to navigate it.They just have bits and pieces even as an adult,
1:35:24
finding out stuff about my health when I was a child that I didn't even know I had, and it's big puzzle, making pieces, puzzles to your life and how to access it and who do I go to,
1:35:40
because my parents aren't around.My mom passed away and I just met my dad two years ago.So do
1:35:48
I ask DCF?Do they have all my records from, you know, my '90s and DMH, their piece.
1:35:59
So I'm living it right now.So this is really helpful for me.I know I'm very quiet.I'm
1:36:08
listening, and I observe and I explain.But it is challenging even now.If it was challenging back
1:36:17
then, we're still going through it right now in the present.And there's nobody to answer,
1:36:23
just requesting and asking a little bit about your life to put it all
1:36:30
together.That's all I have to share. >> First of all, thank you for
1:36:35
sharing that.And if I can ask a couple of questions, I hope it's not too much to ask,
1:36:42
but if I can throw out some ideas, we can make the recommendations so this doesn't
1:36:51
happen to people.So one thing I wondered was like it sounds like one of the things you're
1:36:58
saying is you have to go from place to place to place.You go to DCF, and DMH, you don't know where all the things are because how would anyone know with all the different
1:37:05
agencies.So would it help if there was one person who everyone went to whose job like one point,
1:37:14
and they knew they know where all the agencies are, but you don't have to know that when you go,
1:37:20
would that be something worth recommending? >> It would be a lot easier for families, and just from the history, you know, the past that even now the present, I work at I work
1:37:33
with employment options.I'm a member of ([)] and I see it every day with members who are,
1:37:42
you know, still getting services from live in group homes and whatnot, and they're adults.They're in their 50s, 60s and 70s and they want to know about their life.They want to know
1:37:53
how to you know, so I see it every day.I see it every day.Just by interacting with people,
1:38:02
you know, well, how can we figure it out in the steps, because people don't know.People
1:38:10
really don't know.I didn't know until, you know, the Commission that I had access to all this.
1:38:18
>> ALEX: Yeah. Yeah. It's so hard, and one other question that I have related to this that I've often wondered about is
1:38:28
in my mind, I think okay, well, also, if this were possible, if we came up with a way where people
1:38:34
could much more easily find these things out about themselves, then they also have to know that that
1:38:40
exists, right?And so they have a right to know that that service is there.And so I thought,
1:38:46
okay, maybe the state can mail a letter to all the people who used to get these supports or these services, or were in DCF.But then I thought, but some people probably don't want to hear out of the
1:38:58
blue from the state.Like you said, it's traumatic to go through some of these things.It's hard.And
1:39:05
like a letter just coming out of the blue could be really bad for somebody.That could scare them,
1:39:10
make them feel badly.And I wonder if you have any suggestions or thoughts of is there a good way to
1:39:17
go about it or do you just say >> Well, for me personally,
1:39:25
the trauma piece, the memory just came, and how do you work with them.So for me was I want to know
1:39:35
about my life.I want to know what happened to me and why it happened.And then just remembering bits
1:39:44
and pieces.And then I went back to the towns.I didn't know where to start in the beginning until
1:39:54
obviously the Commission and working an intern at DMH, and it just opened my eyes for another
1:40:05
person, I think I would educate them not to do it alone like I did.I just asked permission if
1:40:12
I could see my file, and I did it, but I would rather have like if whoever needs that access
1:40:24
to have another person with them as they're going through their file.It was really,
1:40:32
really hard for me.And I didn't even go through the whole file.I only went through
1:40:37
the first ten pages and then I couldn't do it anymore.My goal is in the future, maybe,
1:40:45
you know, the end of this year, I request them and do it with a support my support team.And
1:40:54
how to navigate it, it's really important.And I'm not the only one with this issue.I know there's a
1:41:02
lot a lot more people who were raised in the '80s, '90s, '70s.For me personally, I wouldn't go I will
1:41:15
never do that again by myself. >> ALEX: Yeah. Yeah. Evelyn, thank you so much.My God,
1:41:24
that's the core of what we gotta do. >> Yeah. >> ALEX: Do right by this.Thank you. >> You're welcome.
1:41:36
>> ALEX: Are there other folks?I hear someone there on the phone?
1:41:43
>> Yeah. This is Mary again.Evelyn, thank you so much for that personal disclosure.And, you know, what I had said earlier, you know, it's a consistent process
1:41:58
to be able to get your records or your family's record is, you know, I think very, very important,
1:42:07
as I said, but the point just made is also critical, that not necessarily, and I know what
1:42:15
you mean, Alex, as far as just sending everyone a letter, but that could be a little kind of a shock and some folks might not even remember.Maybe they was too young or whatever the case might be.But to
1:42:27
have the knowledge, I mean, you know, knowledge is power, and having the information that you,
1:42:35
as a person, have the right, you know, it's one of your rights as a person with a disability,
1:42:44
as a disabled person, as an individual, that you can get your records.After you're a certain age,
1:42:49
you can sign, you know, a document, a legal document, and you can request as if you know,
1:42:57
a four year request and be able to get records.You know, and, you know, not enough people realize
1:43:05
that, so having the knowledge that you know you can do it and then having a consistent way to
1:43:11
do it, and the other thing that I want to say, which jumps to the burial grounds and folks that
1:43:19
are buried, and I don't mean to be speaking so much, but this I'm retiring the 20th of February
1:43:26
and this is my last meeting here so I just wanted to add, you know, one thing that we've discussed
1:43:33
within this Commission that's been so critical and that I've shared with people as I've told
1:43:40
them about this Commission, whether they're colleagues of mine that work and deal with disabilities or friends that don't at all work in this field, that part of what we're doing is
1:43:52
giving dignity to individuals that actually died in institutions that have unmarked graves.K
1:44:00
>> And I think that's a strong, bold statement to say right at the beginning when we're working on
1:44:06
the plain language summary.And then to continue it by expanding upon the fact that, you know,
1:44:15
some of these graves may say C or P for Catholic or Protestant or might have a number on it but not
1:44:23
even the dignity of a name and even some go beyond that that they may not even have a marker.It might
1:44:30
be under a park somewhere.You know, those are things that are going to, you know, average
1:44:38
person is going to feel touched, as they should, by that, and a bit outraged, as they should,
1:44:44
by that.And that's part of what I think we need to do in the summary of this, is, you know, not
1:44:51
hold back.Say the things that are so critically important and, you know, talk about people being
1:44:57
treated as subhuman, you know, that's a big part of what the summary and the report's going to be
1:45:05
about.So thank you for your time.For the time. >> That's just wonderful.Thank you, Mary.That's
1:45:14
profound.Jim, go for it. >> Yes.
1:45:21
Evelyn, thank you.You spoke very well about something that really you shouldn't have to
1:45:32
go through alone.I'm wondering, as part of kind of recommendations about looking to impact some
1:45:50
of the agency practices and agency resources, or certainly within DMH, there's a lot of attention
1:45:59
to human rights, and general practice, and in kind of this gets I'm wondering about ways to
1:46:12
kind of connect the respect and the history and trying to help employees of the different agencies
1:46:23
become more aware of the history and folks' experiences, and looking to the agencies is
1:46:32
having staff who identify who see it as part of their roles is to helping both current folks and
1:46:44
the historical records are a different issue, but families that are looking for historical records
1:46:53
also need to be responded to.And agency staff should, whatever mechanisms are decided upon,
1:47:02
agency staff should understand what those mechanisms are, and have it be defined as
1:47:08
part of their roles as to point people, family members and others that it might
1:47:15
in the direction of advocacy.So I'm wondering, you know, that those might be some concrete steps of recommendations. >> ALEX: That's wonderful and that goes to
1:47:27
Evelyn used the word navigation and it goes to that idea.Thank you.I think we have time for one
1:47:38
more.Reggie.Where are you at?What do you got? >> I'm going to say it is difficult but I want
1:47:43
to say that I've been with you from day one also, so I want to thank you for all you do
1:47:55
with everything and I hope we can continue.And furthermore, I would like to see Mary stay in
1:48:04
touch with each one of us.[Audio indiscernible]. >> ALEX: Reggie, we lost you there at the end for
1:48:17
a sec.Are you back? >> Yes.
1:48:24
>> ALEX: Oh, there you go.Okay.I lost you there at the end for a sec. >> Okay.I'm saying that I want to thank you for all you do with the Commission
1:48:37
and everything.This is good for us, you know, because I think it's important for people.[Audio
1:48:55
indiscernible].We could stay in touch with me because I enjoy being I enjoy being able to
1:49:06
have my own [audio indiscernible].Thank you. >> Thank you so much, man.Look, we've been to your
1:49:14
point earlier, we've been three years along this road and we're getting somewhere really good now,
1:49:19
and I think your you know, you said early on, I hear a lot, and Evelyn, what you're saying,
1:49:28
Reggie also said early on of like I you know, you said the whole thing about you and your records,
1:49:33
and not getting them and not knowing them, and it's just crucial that we get to be able to do
1:49:39
this.It's really we get to do this, like this is a state commission.That's pretty amazing.So thanks,
1:49:47
everybody.I'm going to I know time is coming up short.Lots of notes we'll pull together.Lots
1:49:53
of work to do in the best way possible.I'll kick it back over to Kate.But this is what a great meeting.Thank you. >> KATE: I think Reggie's share and Evelyn shared
1:50:06
the perfect way to close out this meeting.And leave us with a lot to think about.So we're
1:50:12
looking forward to seeing everyone at the next meeting in March.CDDER is going to follow up
1:50:18
with the meeting information for everyone to review.And does that work for everyone?And
1:50:25
obviously the records group was going to meet in between time, or not the records group, the report
1:50:31
writing group is going to meet in the meantime and discuss more of our recommendations.If any
1:50:39
members have any questions before then, feel free to contact the Commission through the
1:50:44
Commission E mail.All right.If there are no other items to discuss, then we can vote to adjourn.Do
1:50:53
I have a motion to adjourn?And please remember to state your name and let us know who you are.
1:51:00
>> Bill Henning moves to adjourn. >> KATE: Excellent.Thank you, Bill.Do I have a second for that? >> Anne Fracht, second.
1:51:08
>> KATE: Thanks, Anne.It's always the most enthusiastic motion of the meeting.And CDDER
1:51:15
is going to read out the roll call vote.So please unmute yourselves and say yes or no.
1:51:21
>> All righty.Thank you, Kate.This is Christine from CDDER.Just please remember to say yes, no,
1:51:27
present or abstain.Anyway, we'll begin with Elise Aronne.All right.Kate Benson.
1:51:37
>> Yes. >> Stir Linda Bessom. >> Yes. And thank you so much.
1:51:44
>> You're welcome.Reggie Clark.James Cooney. >> Unfortunately I've lost Reggie.
1:51:54
>> No worries, Kate.Thank you.James Cooney. >> Yes.
1:51:59
>> Samuel Edwards. >> Yes. And thanks, everyone, for sharing your stories.It was very impactful.
1:52:06
>> Anne Fracht.Alex Green. >> Yes.
1:52:14
And Mary don't be a stranger! >> Thanks. >> Big Henning. >> Yes.
1:52:22
And I'll see you tomorrow, Mary, at your retirement gig. >> Awesome. >> Andrew Levrault.
1:52:30
>> Yes. >> Mary Mahon McCauley. >> Yes.
1:52:36
And if anyone's around Boston tomorrow between 1 and 4, my retirement party's on the 21st
1:52:42
floor of Ash Burton Place. >> For a fantastic career,
1:52:48
thanks for all you've done. >> Thank you very much. >> Thank you, Mary, and thanks for sharing that information.Evelyn Mateo.
1:52:57
>> ([)] Is taking my place, and she should still be on the call, I believe. >> Who is? >> Camile counselor one from
1:53:07
Mass Office on disability.Yep. >> Evelyn Mateo?
1:53:14
>> Yes. >> Lauri Mederios?Matt Millett.Vesper Moore.Brenda Rankin. Did I miss anyone?I think that's it.
1:53:32
>> KATE: All right.Thank you very much, everyone, and we are adjourned. We'll see you in March.