Organizer's Forum

State Budget Fights on SSI & More: March 17, 2015

Download Audio

Organizer’s Forum: Tuesday, March 17th – State Budget Fights on SSI and Other Issues

TUESDAY, March 17th, 1-2 pm Eastern time, 12-1 Central time, 11-12 Mountain time, 10-11 am Pacific time

  • Call in number: 1-860-970-0300
  • Code: 193134#

Hear from a representative of CA4SSI, talking about California’s coalition work to increase SSI grants on a state level, along with speakers from other states (names to be announced). Tell us what’s going on in your state. Let’s learn from each other in how to advocate effectively in the state budget process and how to work well in broad statewide coalitions.

Speaker Info

Allegra Stout

Community Organizer, Boston Center for Independent Living
617 338-6665 (voice)
617 338-6662 (tty)
60 Temple Place, 5th floor, Boston, MA 02111

Chris Jensen

OrganizerResources for Independent Living
420 I Street, Suite 3, Sacramento, CA 95814
916.446.3074 (Voice & TTY)
916.446.2443 (fax)

To give you an idea of who joins our calls, if you are interested in joining on Tuesday, please fill out this quick form!

CART: The call will have real-time captioning (CART)! The website where you will be able to view the captioning is Username: forum. Password: forum. Thank you to the National Disability Leadership Alliance for sponsoring the captioning of this call.

** If you need additional accommodations to participate in the call, please let us know as soon as possible.

MARK YOUR CALENDARS! The Organizer’s Forum has a call on the 3rd Tuesday of each month, 1-2 pm EST (10-11 am PST).

NOTE: We have a listserv for discussion on these issues. It’s; please go to: and click “Join this group!” We also have our separate announcement-only listserv to allow everyone to easily get notices about the Organizer’s Forum, called Please email us to be added.

We also have a facebook page! We can use this is a way to continue conversation beyond the monthly calls. Please “like” Organizer’s Forum on facebook.!/pages/Organizers-Forum/228971863811531?sk=info


The Organizing Workgroup of the National Disability Leadership Alliance hosts these calls the third Tuesday of every month as a resource for disability organizers, in an effort toward building the organizing capacity of the disability community across the country. They generally follow the format of a Welcome followed by 2-3 experts in a given area speaking for a few minutes on their experiences, advice and challenges. The calls include a 20-30 minute question and answer period.

To ask questions via CART: Sign-in to the Chat function on the right side of the transcript and type your question. One of the call facilitators will read out any questions posted there.

Because we want to maximize the generously donated CART services, we will begin the call promptly at 1pm and end the call promptly at 2pm (eastern time). A few other reminders about call etiquette:

  • Say your name before each time you speak
  • Speak one at a time
  • Speak slowly and as clearly as possible

So you can mark your calendars now, Organizer’s Forums are held on the 3rd Tuesday of every month. If you have suggestions for call topics or presenters for upcoming topics, please email them to or

Looking forward to talking with you all!

Jessica Lehman and Diane Coleman
Co-Chairs, National Organizing Workgroup

Date:  03/17/15

Event:  Organizers Forum on State Budget Fights on SSI and Other Issues


>> The Captionist:  I’m dialed in to the audio.  Standing by.

>> [Inaudible} disability rights and resources.

>> This is Lindsey Garrett with the national council on independent living in DC.

>> It’s Jessica Lehman.  Who sells on right now?

>> The Captionist:  The CART provider is also here.

>> Jessica:  Great.  Somebody else said they were having trouble getting on.  Did you have any trouble?

>> Dawn:  This is Dawn Clanton.  No.  None.

>> Allegra:  Hi, Jessica.  This is Allegra Stout joining.

>> Diane:  This is Diane Coleman.  I’m on, too.

>> Jessica:  Hi, Diane.  Are you on the chat?

>> Diane:  Yes.

>> Jessica:  Chris, are you on?

>> Chris:  This is Chris, resources for independently.

>> Jessica:  Okay.

>> Chris:  I had misdialed the phone number and it wouldn’t let me in.  Go figure, huh?

>> Jessica:  That would be a problem.  It sounds like we already have 15 or so folks, which is great, especially considering our short notice.  My apologies again.  Why don’t we go ahead and get started?  Welcome, everyone.

>> Very short.  I only had 15 minutes.


>> Jessica:  And you still got on.  That’s great to hear.  We did send it out last week, but I know some people don’t get it right then.

>> Yeah.  I just got it today.

>> Jessica:  I’m going to go ahead and get started, kind of introduce us here.  So my name is Jessica Lehman.  I work as executive Director of senior and disability action in San Francisco, California, and I co chair the Organizers Forum with Diane Coleman from Not Dead Yet.  And the organizers’ for sum a project of the National Disability Leadership Alliance, which is a coalition of cross disability organizations.  Diane, do you want to introduce yourself and say anything about NDLA?

>> Diane:  Sure.  Diane Coleman.  As Jessica said, with Not Dead Yet.  We’re one of 14 national disability groups that are run by people with disabilities who are part of a Steering Committee that brought together this alliance of groups run by people with disabilities to work on public education and public policy relating to disability.  And one of our efforts is this forum.

>> Chris:  I am involved with Not Dead Yet, also.

>> Diane:  Great.

>> Jessica:  So the organizers’ forum is really designed to support and expand community organizing in disability communities.  And so we have a different topic each month and some of those topics are about how do we work with different communities?  How do we look at multiple identities?  Some are about how do we do the work?  So things like today about doing how toes like state budget work and also issue based topics.  Today, part of the reason for the late notice is today was going to be a different topic, which is police brutality.  With we’re hoping that will be our topic for April.  Mark your calendars.  Always the third Tuesday at the same time.  And to you NDLA for paying for the captioning.  We do have CART on the call and if you want to log in, there’s a link on the site and Diane is there.  You can type in questions and comments there that she can read out on the call.  We also have discussion if people just want to say what they’re thinking or what questions they have off we hear from our speakers.


A couple of quick reminders.  We always like to ask people to speak slowly and clearly so that we can hear you and say your name before you speak.  If you need to accept away from your phone for a moment, please don’t put us on hold, because we don’t want to hear the hold music, but you can always just hang up and call right back when you’re free again.


Diane, I actually don’t have my list in front of me today.  Can you remind me there are any announcements we need to make before we introduce the topic?

>> Diane:  No.  I think you covered everything.

>> Jessica:  I mentioned we have a different topic every month.  The Organizers Forum is kind of an ever evolving thing and we’re always looking for new topics and new people to help out with plan it go.  If you have ideas, let me know.  My e mail is in the announcement that you should have gotten.  All right.


We have a couple ways of income touch with each other, particularly for people that only heard about this 15 minutes ahead of time.  I would urge to you sign up on the listserv that we have.  It’s a Yahoo group.  You can go to it Yahoo and do a search for Organizers Forum, all one word, and just click join.  It’s really easy to do.  If you believe trouble with it, let me know, but if you join there, we always send out announcements that call with listserv.  There’s a little bit of other traffic, but certainly not a lot.  I don’t want your in box to be bombarded.


We’re also on Facebook, Organizers Forum, just like it sounds, with a space in between.  We really invite people during the call or afterwards to share thoughts that you have if one of the speakers says something that really stands out to you.  Go ahead and post that up there so that people who couldn’t make the call can hear it or request can, you know, can learn about it and we can have some ongoing dialogue, because we recognize that an hour is never enough to fully cover the topics that we’re mentioning.


We also do have a website and it’s disability  That’s the NDLA website.  And you can click on Organizers Forum.  And thank you to Kristen at Center for Disability Rights in Rochester, New York, for keeping that going.  So if you want to look at recordings or transcripts of past calls, they’re all on the website and you can look at them there.


Okay.  On that note, now I’m going to get started.  So we are delighted to have two speakers on our call today.  I’m sure there are people who have joined us who have other experience and knowledge and insight to share.  Our topic is about State Budget Fights.  And so we have Chris Jensen from resources for independent living in Sacramento, California, who is going to talk about work be around increasing the state portion of SSI here in California and working as part of a coalition.  I think part of what we’re trying to do today is explore what that’s like, bringing disability groups and disability issues into broader coalitions where people may not have a lot of experience working on disability issues and what are some of the issues that come up there?


And then we’re delighted to also have Allegra Stout from Boston Center for Independent Living, and she’s going to talk a little bit about what they’re doing in Massachusetts with their budget.  They’ve had some exciting work around housing, around personal assistance services, and so Allegra will be able to share what they’re doing as some of the lessons learned.


So on that note, let’s do quick introductions.  Let’s just do name, organization, and city so that we have an idea of who is on the call.  So we’ll start with the West Coast.  Go ahead and introduce yourselves.

>> Mark:  Mark [inaudible] community advocate, Silicon Valley independent living center in California.

>> Maddie:  [inaudible] center for independent living in California.

>> Jessica:  All right.  Anybody from California?  How about the northwest or the southwest?

>> [inaudible] Montinno for center for disability action.

>> Jessica:  My coworker, yeah.

>> Hi.

>> All right.  Colorado?  Utah?  Montana?  We need to work on our West Coast representation, apparently.  How about the Midwest?

>> I just joined from the west.  This is Adrian lobby from the radio program pushing limits.

>> Jessica:  Hello, Adrian.

>> Adrian:  Hi.

>> Jessica:  Do we have anyone from Texas or from the south?

>> Julie:  This is Julie Espinoza with regional Center for Independent Living.

>> Judy:  This is Judy Lloyd with disability rights and resources, Birmingham, Alabama.

>> Allison:  Allison [inaudible] little people of America.  I’m based in Wisconsin.

>> My name is Fred Hess.  I’m from new castle, Pennsylvania, and I’m with disability options network.  It’s a center for independent living.

>> Jessica:  All right.  Let’s go ahead to your region.  How about the northeast and New England?

>> Allegra:  Allegra Stout from Boston center for independent living.

>> Dave:  Dave [inaudible] from Center for Disability Rights in Rochester.

>> Jessica:  Okay.  How about the rest of the East Coast?

>> Diane:  This is Diane Canton with the Southeast Kansas Independent Living Resource Center in Sedan.

>> Lindsey:  This is Lindsey [inaudible] I’m with the National Council on Independent Living in DC.

>> Jessica:  Oh, thanks for joining us.

>> Lindsey:  Yeah, absolutely.

>> Jessica:  So anybody that hasn’t yet introduced yourself, please go ahead.

>> This is Savannah [inaudible] self-advocacy network and I’m from Pennsylvania.

>> Jessica:  Thanks, Savannah.  Anybody?  Okay.  I don’t want to hold up our speakers too long.  I’m going to go ahead and mute everyone and then we’ll ask our speakers to unmute so we don’t have any background noise.  Hold on one second while I click that.  Chris and Allegra, if you want to hit star 6 to unmute yourself.  I don’t know if you said which one of you would like to start.

>> Chris:  This is Chris.  We didn’t really decide who wanted to start.

>> Allegra:  Chris, you can go ahead and I’ll go after.

>> Chris:  Okay.  I’ll go ahead and start.  First, let me apologize to everyone.  I lost my voice over the weekend, so I’m hoping everyone can hear me okay.  Can everyone hear me okay?  How can you tell if everyone can hear me?

>> Jessica:  You sound great, Chris.  You’re really clear.

>> Chris:  Thanks very much.  My name is Chris Jensen and I work for resources for independent living or independent living center in Sacramento in the capital of California, and we provide independent living resources and services to people with disabilities in Sacramento county and yellow county.  And I’ve been working for RIL for a little over 7 years.  And I’ve been their community organizers for a little over 6.


So I just want 20 give a little background on the campaign that we have and why we’re doing it.  Then we’ll go into a little bit of history as to how the coalition came about and how we’re working as disability    a disability organization in cooperation with a lot of other agencies.  So unlike other states, not only do we get the federal SSI, but the state also adds what’s called SSP or the state supplementary payment.  And back in 2001, the total amount was $712 and there was 102% of the federal poverty level.  Today, what’s proposed for 2015/2016, the total amount would be $900, which would only be 91.8% of the federal poverty level?


Last year I knew someone who worked with younger coalition in Sacramento, and I found out that many of the hunger advocates were very concerned about food insecure for people on SSI.  And I’ll just add another portion to that.  In California, we are the last state to have what’s called the cash out policy, which basically means that people whose sole income is SSI are ineligible for food stamps, which nationally is known as SNAP and in California we call it CAL FRESH.  So there is a lot of food insecure in this particular population.


So I found out that these food advocates wanted to do something on the state level to help alleviate that food insecure.  And so I got myself invited onto the group and soon became very vocal, because this is an issue that’s very important to what we do.  And I think that’s a lot of, you know, the collaborative work is really getting involved in things that are high up on your list of issues that need to be addressed, and this one has been on the back burner for a long time.


So they moved forward.  Their legislative action was not successful last year, in the last budget, and so we decided that we would take a look as to whether or not a statewide coalition was really going to be something that people would be interested in.  So we started calling our various lists of folks throughout the state and had a conference call.  And it was then decided that yes, there was enough information or interest in having some type of a statewide coalition.  So then we decided to put together a video conferencing really, as a kickoff for the coalition, no name.  We had no name.  We had no structure.  Nothing.  But we had five sites throughout the state, all of the video conferencing was donate by the California endowment, and our coalition was started.  And it’s basically    I would say the majority of it are hunger advocates.  There are over 200 organizations as members of the CA for SSI or Californians for SSI coalition.  I’m taking a look at the list here.  I’m looking at probably 340 are statewide organizations.  We have a lot of local and regional organizations, also, through many disability advocate groups.  There are senior groups.  We have the western center of law on poverty, involved saint Anthony’s, which runs a food bank and a clothing bank and a food kitchen in San Francisco.  I’m sure Jessica is familiar with their work.  Very, very, very involved.


So we started moving forward, and the one thing that we discovered early on was that we couldn’t truly be successful unless we were able to Garner the interest and the advocacy of people who only have SSI as an income source.  So one of the things that we do here at RIL is we sponsor a disability advocacy group.  They’re called disability organizing group for initiating total equality, and the acronym is DOGFIGHT.  It gets kind of catchy, because people talk about it.  We begin to organize how we are going to best participate in this activity.


So the disability advocates, I would say the grassroots advocates, for them, it’s not as important to know the facts and the figures and the who and the what and the where as it is to be able to articulate their story very concisely and compelling, because that’s truly what I think affects people more than anything.  We held our first gathering    let me put it like this.  We had a budget subcommittee hearing.  It was the assembly, a budget subcommittee on health and human services.  It was last week.  And I was talking with my colleague from the western center on law and poverty, and he said it was the best turnout for the SSI issue he has seen in 15 years.  And the reason for that was we had people who bussed in from the bay area, people from Sacramento who are the folks that live on SSI telling their story to these legislators.


And so we have a general call every other week.  We have subcommittees.  I am the co chair, along with one of the hunger advocates, frank Timarillo down in L.A.  We co chair the outreach Committee.  We’ve used Facebook and Twitter to try to raise the consciousness of folks that this is really an issue.


So I don’t know what more I can share at this point.  I’m sure there will be questions and I want to make sure that I leave room for another speaker.  Is there anything else, Jessica, you want me to add?

>> Jessica:  I think that’s a really great start, Chris.  For you it that.

>> Chris:  Thanks, Jessica.

>> Jessica:  We’ll turn it over to Allegra.

>> Allegra:  Okay.  Thank you.  Thanks, Chris.  So my name is Allegra Stout and I work at the Boston Center for Independent Living.  I’ve been here about two and a half years and I’m the community organizers at BCIL.  And at BCIL, we focus both on grassroots organizing, building up a base of individuals with disabilities in our community who would take action on issues, and then also, we do a lot of coalitional work with other organizations.  And I’ll be focusing on that latter part, the coalitional work today, although I know that other organizers on calls you discuss more of the grassroots organizing aspect.


And so in terms of state budgets, we are engaged in the state budget process every year.  There are 11 independent living centers in Massachusetts, but the Boston center is right next to the statehouse, so we have that advantage of being able to be up there pretty frequently with our grassroots members.  And it really is a yearlong process of following the issues and developing relationships with legislators so that with we’re able to take action at key points.  And so the two issues that I want to talk about a little bit today are our work around mass health and personal care attendant program in Massachusetts, which recently faced potential cuts, and also affordable house fog our people with disabilities.  I also know that I sometimes tend to speak quickly, so if the CART provider is having trouble, please tell me.


And also, just in terms of the state budget in general, it’s often a matter of developing your long term plans, but then being able to respond to emergencies.  And so I’ll talk about the Medicaid or MASS health issues first with the focus on how we work with other organizations and coalition.  So we have a history here in Massachusetts that whenever there is a new governor, the personal care attendant program through Mass health is threatened for cuts, and so this year we do have a new governor, so we were able to be proactive by reaching out to him as soon as he took office and contacting him, asking for meetings to discuss the importance of the personal care attendant program, although he didn’t get back to us, as we knew he wouldn’t, but at least laid the groundwork.  So as you’re looking at these budget issues, I encourage to you look for those opportunities to be proactive and reach out before there’s an emergency.


And then as we expected that he would, the new governor, Governor Baker, tried to cut the program.  He announced that he was going to cut or limit eligibility for personal care attendants so that people would need to have a higher level of need in order to qualify.  So at that stage, we reached out to our network, and a lot of the reason that we were able to be successful in this fight, it was in the last few weeks, was that we organize a statewide personal assistance coalition, which is a loose group made up mostly of different organizations involved in providing personal care attendants services or providing skills, trainers, and nurses to evaluate people for the Medicaid personal care attendant program.  And that coalition meets every other month and focuses largely on issues related to service provision and managing their organizations to provide effective services.  But because we have that ongoing relationship with organizations from around the state involved in this field, then when an advocacy issue like these budget cuts does come up, it’s much easier to activate them and to get the word out quickly than if we had to recreate those relationships every time an advocacy issue you came up.  So that’s a big part of how we were unable to be effective, just by getting the word out through that network that we already keep active.


and then in addition to that, we work closely with the personal care attendant union, as well as the Massachusetts domestic workers coalition, because we’ve been really careful to focus on how making a successful personal care attendant program means attend to go both the needs of the workers and people with disabilities.  So we work on issues like last year we passed the domestic workers bill of rights here in Massachusetts and developed relationships through that so that then we were able to call on the domestic worker organizations when we faced these budget cuts.  So that kind of reciprocal relationship is really key in coalition, whether they’re former coalition or just more informal relationships.


And also, just back to being proactive, we scheduled an advocacy day at the statehouse related to the personal care attendant program and got the word out to these other organizations, but we even knew what the specific cuts were that were being threatened, just because we have a history of the governors trying to cut the personal care attendant program.  We actually won by the time that advocacy day came around, but we still used it as an opportunity for these different organizations to come together, including most of the independent living centers in the state to keep the issue at the forefront.


So now I’ll just speak a little bit about our housing campaign, which has used a lot of similar tactics, but looks a little bit different.  We’re trying to increase funding for a particular state budget program that provides housing vouchers for people with disabilities.  And so that’s been a multi year campaign really arising out of our direct services, because housing is the number one need that people come to us for in our independently skills training programs.  And so on that campaign, we’ve just developed a really strong alliance with a statewide affordable housing organization, CHAPA.  The Citizens Housing and Planning Association, and we’ve worked with them to get our budget priority for housing for people with disabilities on their overall list so that we participate in their coalition meetings they’re already holding with other housing organizations.  So we participate on that level and then we’ve also worked with them to develop a subcommittee for housing for people with disabilities, and we’ve used that as an opportunity to bring in other disability specific organizations to focus on the campaign.


And I also encourage organizers who maybe don’t have as much legislative advocacy or budget advocacy experience, like if you’re working in ILC or another organization and that hasn’t been your focus reaching out to these issue specific advocacy organizations, it can be a really effective way to get up to date information on what’s going up at the statehouse and what steps you need take.  Building coalition can really be key for that kind of technical assistance and that kind of up to date information.


In our housing campaign, we’ve also been working on developing a list of organizational endorsers, so we tended to keep things casual.  We don’t have a formal coalition with formal decision making processes, but instead, we have a list of organizations that have told us, just verbally or through a Google forum that we set up, that they support our budget request for housing for people with disabilities and then we have them on a list that we’re able to show the legislators, so that there are disability and housing organizations from around the state who are focused on this issue and supporting this issue, and then we host occasional conference calls every month or two months so we keep people updated on what’s going on with the campaign and the latest ways to take action.


And I’ve really found that a lot of organizations wanted to be involved with this kind of budget campaign, but they don’t necessarily have the staff capacity to put a lot of energy into strategizing or knowing what the next best steps are.  So it helps to be able to provide them with that information about what is going on and how can they take action at key points?  So those of us who are fortunate enough to have organizing roles can really use that to use that leverage to mobilize organizations around the state who may not have so much energy, but still want to be involved and have people who can be involved.


And another thing that we did is we’ve been working with homelessness coalition, and they added our housing budget priority to their list of priorities so that we got our folks to show up at the statehouse and support the full plight of homelessness, and they asked their members be to support house fog disabilities.  So it’s the matter of being reciprocal and being able to meet the advocacy needs for different organizations who share these common goals.


so just to conclude, I would say, again, that it’s really a matter of building relationships and sharing information among organizations year round so that when emergencies are coming up, you’re not reaching out to the people for the first time, although if you have to do that, then    you have to do that if necessary.  And also just giving people the clear information they need about opportunities to take action and doing as much of the work as you can to make it easy for other organizations to get involved in the work that you’re doing.


And just one final note that a lot of the organizations we work with on these campaigns aren’t specifically in the disability community.  I’ve tried to always be open and proactive about educating them about access for events and information so that we can make sure that the disability community is included, because, you know, we’re working together, so I’m happy to share that information with them about making their events more accessible proactively.


I’ll open it up and I’m happy to take any questions.  Thanks.

>> Jessica:  Huge thank you to Allegra and Chris for all of that really interesting information about what you’re doing and helpful advice on what we can do all over the country.  Because we just had two speakers today, we have a little bit of time.  Do we have folks from other states that want to share just very briefly what are some of the key issues that you’re working on in your state budget and what are some of the coalition that you’re working with?  And I forgot remind people, everyone is muted, but you can hit star 6 to unmute yourself.

>> [inaudible] really up against it.

>> The Captionist:  I’m here.

>> Jessica:  We can go ahead and open it to questions and comments at the same time.  Anyone who would like to speak, go ahead and hit star 6.

>> Adrian:  This is Adrian an Latte from pushing limits.  We did do, and I say not from the radio program, but a group of activists did a big demonstration up in Sacramento, California, where with we closed down.  We had the Highway Patrol out.  We were very visible in our wheelchairs and various adaptive aides.  They were quite gentle.  They arrested us and then processed us and let us go within the same day, and there were no consequences.  We did have a pro bono attorney that worked it out for us so we didn’t have to pay a fine even or anything.  And we got a lot of publicity for that.  The idea that people with disabilities are so desperate and need to help and need changes to the budget.  It’s very, very attractive to the media.

>> Allegra:  That is Al gray.  I’m just noticing that I’m also in the

>> If you have a chance, Jessica, to send out that link again, too.  My link that I had for the chat room didn’t work.

>> Okay.  Mine actually is working.

>> Yeah.  A little bit got missed, but I think we’re fine.  And as far as the link, I know other people are on and I clicked on the link in that e mail, so I don’t know if it did something weird, but feel free to try again.  You can also just go to  So other questions or comments?  This is Jessica and I always have a couple questions.  One is I wonder if Chris and Allegra or some other people can talk about thousand use state budget issues to mobilize people in our communities?  And particularly, I think it’s sometimes a challenge, depending on where in the state you are.  Sometimes it’s hard to get people to the state capital logistically.  But sometimes, also those state issues feel a little bit removed and people don’t necessarily see the impact be on their lives.  And so, yeah, how do you kind of think about community organizing in that context?

>> Chris:  For the communities that I work with, these are people who not only have disabilities, but a very low income.  And it’s really easy to draw the connections between the decision that’s being made or the proposed budget that’s being presented and how it affects their lives directly.  The challenge is always getting them to the capital due to transportation issues or if it’s held, like we’ve got one coming up on the 26th at 9:0:00 a.m., and not everybody can get themselves    9:30:00 a.m., and not everyone can get themselves together and out the door that early in the morning.  So it does become a challenge.  So I think that hearings are important, but they’re not the end of things.  Making appointments to speak directly with legislators is important.  Visiting the district offices, a lot of people can’t make it out all the way to Sacramento, and we have a fairly long state.  So from L.A. to Sacramento, it’s a big effort.  Put it that way.  But they’ve got the district offices where they can go and talk to people about the issues.  So it’s all about getting creative, figuring out ways to get people together, figuring out transportation.


We got a bus together to get people here from the bay area.  So that was all about capacity for funding.  We had to do a lot of shuffling around that, because everybody has very tight budgets it seems these days.  But we were able to do it.  We’re looking to do it again on the 26th.  So I think when you want to do something, you just work a little harder to try to figure out how to do it.

>> Allegra:  I agree that when you draw the connection between what’s happening at the state level and people’s daily lives, it’s often pretty easy for people to say that connection, especially what we experienced with the personal care attendants issues.  When you’re threatening people’s issues and the assistance they need every day, they want to be involved and they know it’s a crisis.  And the same has been true with housing.  With housing we’ve had the most success with organizing people who have had housing difficulties in the past, but are being in a nursing home or homeless, but are currently more stable, whereas due to their life circumstances and also not always having instant access to phones or e mails.  We’ve had a harder time consistently organizing people who are currently homeless or facing other housing difficulties.


And in terms of getting people to the statehouse, it is difficult when we’re working with organizations from across Massachusetts.  One thing is just that we always start events at the statehouse a little bit later when we have control of them, as opposed to being run by the state.  So 11:00 o’clock or later.  I was going to say something else, by I don’t know what it was.

>> Jessica:  Well, thank you to both of you for those thoughts.

>> Adrian:  I have a question.  Someone said, I think it was the man who organizations the DOGFIGHT, that the most important thing for people to do is tell their own story.  And I have talked to people who feel that this is a pretty demeaning situation, that they’re asked to go up to the state capital again and again and tell their pathetic sad story, which sometimes makes them cry in front of people with suits.  But it kind of makes this charity argument.  On the other hand, I know that that’s what legislators do respond to that, so I wonder if people want to talk about the tension between that kind of dynamic?

>> Chris:  If I may just respond initially, a lot of it has to do with your organizers.  It can be a very empowering moment for a person to tell their story.  Just the feedback that it I can give you in regards to it the hearing we had last week, we probably had 50, 60 people provide testimony.  We had had a rally and it got emotional at times, which I think is absolutely appropriate, because these are real lives.  Right?  These aren’t just numbers on a page.  And on the way home, I got one of my friends, who was on the bus going back home with them, said that they were so excited and pumped up that they’re actually looking forward to coming back on the 26th and doing it again.  I’m thinking I don’t think it needs to be demeaning.  I don’t think it needs to be looked at as charity.  This is something that our country provides so that people can participate in social activities.  They live in the community apparently rather than in an institution, and it’s their right.  So I think you really have to frame it as an empowering moment and that they’re standing up for their rights.

>> Allegra:  We also focus a lot in the personal narrative, and I think one thing that helps sometimes is focusing on it as a skill so it’s not just necessarily that someone is getting up and telling their raw story, but instead, we practice a lot and we look at techniques for effective storytelling and then, as Chris is saying, it becomes empowering.  So this is a skill that someone is able to develop to contribute by using their personal story, and also, it can be a matter of finding that balance of what details do you want to share that you’re comfortable with?  Not that it shouldn’t be emotional.  Not that you shouldn’t cry at the statehouse or in front of legislators, but where is your comfort level as an individual in what you feel comfortable sharing and what doesn’t feel demeaning to you?  And I think that’s really a personal question that some people just aren’t going to feel comfortable sharing their stories, and that’s okay, too, and there are other ways for them to participate and other people will find a lot of power in using the experiences that they’ve been through to make a change.  And for a lot of people I know, that enables them to feel like they’re giving back after they’ve benefited so long for services and seen themselves as a service recipient.  Now they’re taking that and turn it go around to make a change for others.

>> Chris:  I totally agree with what Allegra just said.  We spent probably four hours on how to tell your story, how to craft it, how to stay on topic over the salient points.  What is your comfort level?  What part of your story do you want to tell in your little one minute segment that you get?  So it wasn’t just throwing people out there and having them tell their story.  There was a lot of preparation involved.  So that’s why they had that.  We also do that.

>> Jessica:  I think that’s an interesting question and I really appreciate it and agree with Chris and Allegra’s responses.  I also wanted to add, I think sometimes it’s tricky in coalitions where there are groups that aren’t disability groups and, you know, don’t have a lot of experience working with people with disabilities.  I think sometimes ableism can come out where people will react to stories with sort of, oh, my God, I feel so sorry for you.  That must be so hard being disabled.  Right?  And it should be that’s so hard that your attendant program got cut.  Or that’s so hard that housing isn’t affordable.  But I think sometimes that does come across in more of a I’m sorry you’re disabled be kind of thing.


and so I think there is a lot of education that we have to do along the way in coalition.  And I have found sometimes just being really up front about that and saying when we’re planning it, you know, with other organizers in the coalition to say we really want to make sure that this is the message and that this is not the message and to kind of ask people to help educate their own members ahead of time.  And I think we can’t educate people out of their ableism in one action, but I think there are some simple things to do to really ask organizers to pass on, hey, we don’t want this to be    we don’t want to be pitying people with disabilities.  We don’t want anyone who tells their story to be reacted with somebody feeling sorry for them.  We really need to focus on this is a problem that this is happening and here’s the solution and just kind of continuing to pass on that message so that we can make sure that it is a more empowering experience for people to tell their story and have others say, yeah, that’s outrageous and we need to do something about it.

>> Allegra:  I’ll just add that last week I was at a homelessness lobby day at the statehouse, and a young woman who was there with another advocacy organization got up to tell her story as one of a line of people telling their stories.  And she said at the beginning before sharing her powerful story of being a homeless youth that this is inherently exploitative that she had to come here to the statehouse to share very personal details to get legislators to pay attention when they don’t pay attention to homeless people they might walk past on the street.  And I can see that, and I think that, you know, I think it’s important to be honest about that, that we shouldn’t have to do this.  People shouldn’t have to tell their very personal stories to lawmakers to get them to respect basic human rights and basic human needs.  So I do think it’s an unjust situation that we’re there in the first place, but I also think that as Chris and I were saying, it can be an empowering experience despite that.

>> Jessica:  Other questions or comments?  We have a little music at least.

>> [inaudible]

>> Jessica:  What was that?

>> Chris:  That was Mark.  This is Chris again.  I just want to add a little detail here.  One thing in what we did, we have like an empty space there.  We got an on line petition going so that individuals from all over could sign the petition, and it’s through a website called SALSALABS.  And when people signed up, they also provided their phone number and their e mail and they used that.  There was a comment space if they wanted to provide a comment, and we’ve used that in organizing.  We were able to group some of the comments by legislators so the people who were on the committees, we could target them directly, and we can also, then, contact everyone that signed the petition to let them know when hearings were coming up and various advocacy opportunities.  So that’s another tool that we use to stay in contact with we’re calling it boots on the ground, folks.

>> Jessica:  You there, Chris?

>> Chris:  Yeah, I’m here.  Am I muted?

>> Jessica:  No.  We can hear you.  You said something about boots on the ground and it sounded like you were going to continue, and at least on my end it went silent.

>> Chris:  I was messing with the phone trying to figure out if I was muted or not, so I missed whatever you said, Jessica.

>> Jessica:  I just said you said something about boots on the ground and it sounded like you were going to continue, and it went silent, at least on my end.

>> Chris:  Oh.  Did you hear anything that I said prior to that?

>> Jessica:  Yeah, before that we got it.

>> Chris:  That was the end of it.

>> Jessica:  I’m sorry.

>> Chris:  No, no.  That’s okay.  My voice is not what it should be this morning.  Anyway, I would also invite anybody in California, that if you want to get involved and you have not yet gotten involved with our efforts to change the lives of people that are on SSI, seniors and people with disabilities, feel free to contact me.  I’m sure that Jessica has provided the contact information.

>> Adrian:  I have one more question, which it’s late, so I don’t know if we can really discuss it, but I’m curious about do you point your activities to democrats?  To people who are somewhat favorable?  Do you point them to the hard core people who are not?  Do it you see this as a partisan    just what is your strategy when you go up there to talk to legislators?

>> Allegra:  For us, we don’t see it as a partisan issue and we do a combination of going for president and depth.     for breadth and depth.  As an organizer, I recruit folks with disabilities who want to be involved from the community and we’ll meet with whoever their legislators are.  And then also, at certain key points such as when the house budget or the Senate budget has just come out and we cosponsor an amendment, with we’ll go up there and visit everyone.  But then in terms of more intensive contact or looking no leaders, legislative leaders in the campaign, we’ll focus on those who have been supportive in the past of our issues.  So not necessarily democrats and republicans, one or the other, but people who have worked on independent living or housing or whatever this specific issue is in the past.

>> Chris:  I totally agree with what Allegra just said.  There are republicans with disabilities, so I think that it would be foolish to not reach out to those republicans in the legislature, because those folks live in their district.  You know what I mean?  It is a non partisan type of an issue.  It’s just maybe you might frame it a little differently.  My experience has been that the republicans that I’ve talked for were not so interested in facts and figures and this happens and that happens.  What they were interested in is how these decisions actually impacted peep’s lives.  That’s what they were interested in.  And so you might have to change your tactics a little bit and reframe the message, but it would be, I think, an oversight to go on reaching out to both parties or what have you.

>> Jessica:  Chris, I was thinking a moment ago, you read my mind, because I was going to ask both of you, how can people help?  And so you were talking about the petition, Chris.  Can you say, is it useful for people all over the country to sign it?  If you send me a link, I can fast on on the list or maybe you can put it up on Facebook and then if either of you want to say more about other ways that people can help.

>> Chris:  So thank you, Jessica.  Whether or not it’s effective for people out of state to sign the petition, I don’t know, because the legislators    it all depends on what really makes an impact for legislators.  I think that mostly, they want to hear from the people that either live in their district or live in their state, but I wouldn’t want to exclude anyone from signing it if they wanted to.  Just make sure that your information for where you live is on there so that we know how best to use that information.  And I think that if people out of state are as interested in this as people within California, to it me that’s a plus.  That means something.  And I will definitely forward not only the link to the petition, but also the link to our organizational letter, because these are both live documents and we’re still gathering names and partnerships

>> Jessica:  Did you want to say anything about that, Allegra?

>> Allegra:  Yeah.  I would say that for us, we have been focused very much on individuals and organizations within Massachusetts.  I’m not sure about how people outside of the state would be able to help, except that I’d love to continue sharing ideas and hearing about what’s going on in other states so that we can learn from each other.  I know that Jessica has my contact information to share.

>> Jessica:  Great.  Well, I think it’s time to wrap up.  A huge thank you to Allegra Stout and Chris Jensen for the excellent information.  Thanks for preparing all of that and sharing it with us.  And thanks to all of our participants.  You’ve had really helpful discussions.  This is a topic this is always changing and some things are constant, but it’s really good to keep talking about T so as Allegra and Chris mentioned, we do have their contact information if you would like to follow up with them, and that will be on the NDLA website right away.  That’s disability  You can also go there a few days from now for the transcript and the recording of this call.  And then you can also find information there about our next call and I want to invite people again to come to the organizers if you haven’t already liked our Facebook page, because we ever a lot of ways of being in it touch with us or they have ways of being in touch with each other.  Thank you, also, to our captioner.  And our next call will be on Tuesday, April    where is it?  Tuesday, April 21st at the same time.  So we look forward to talking to you all then.  Thank you.

>> Chris:  Thank you, Jessica.

>> Allegra:  Thank you.

>> Jessica:  Have a nice day.

(End of event.)