ROUGH EDITED COPY
2015 EHDI Annual Meeting
Topical Session 5
Coe Room
THE POWER OF GRASSROOTS: SHIFTING THE PARADIGM
TOWARDS COMMUNITY ORGANIZING TO EFFECT LEGISLATIVE CHANGES
FOR CHILDREN WITH HEARING LOSS
11:30 a.m.
March 10, 2015
CART SERVICES PROVIDED BY:
ALTERNATIVE COMMUNICATION SERVICES, LLC
PO BOX 278
LOMBARD, IL 60148
* * * * *
This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
* * * * *
> BRITTANY HILDEBRAND: Good afternoon, everyone. My name is Brittany Hildebrand. This will be the second session. It will be 30 minutes. I'll be coming around and passing out evaluations, if you don't have one, and okay.
I will be passing the mic over to the presenter at this moment so he can introduce himself.
> OPEOLUWA SOTONWA: Good morning, everybody, my name is Opeoluwa Sotonwa and I'm from the Missouri Commission for deaf and hard of hearing. I'm very happy to be here for a number of reasons. I always tell people that I've made it to Kentucky. Kentucky is actually, I've come back. It was my first home so it's a little bit of a home coming, getting to see old friends, getting to meet new people, so it's wonderful.
And the topic I want to share with you today is really an important issue that I don't think we often think about. There's a political divide, and there has been for a long time, so I want to talk to you today with the hope that you will bring these ideas back to your home, and keep this topic in mind and these folks in mind as you're working in the community, trying to impact the lives of deaf and hard of hearing children develop something that will bring change.
This is the agenda for our time together today. Now, I want to talk about the word "grassroots." Can I get maybe some callouts from the audience? What do you think about when I say the word "grassroots"? What comes to mind? What is a grassroots effort? Back of the room?
Start at the beginning.
Thank you. That's good. It's really talking about the local community. Who are the people who are impacted by whatever decision is being made? Who are these people who see a need for change, coming together as a cohesive unit. And I'm going to share some examples with you.
If you don't empower your local community at that grassroots level, if you're not giving them the right tools, they don't actually flow what to do, so they need to be energized and they need to be empowered to move forward.
And when you see people who have a similar issue, who have a shared experience, they're more motivated to fight together, to work together for change, because there's the sense, you have a deaf child and I have a deaf child, and we're struggling with the IEP meetings or the school situation, we can come together and we might be able to solve this issue.
In the political realm, people talk about politics, and it actually starts with people, people who have similar issues and want to see change, have similar concerns or similar ideas. Now I want to talk a little bit about the temperament of a grassroots movement, what are the features of the grassroots community that we need to keep in mind when we're energizing this base?
Many politically savvy people make the mistake thinking that they can manage the grassroots people. For example, what we saw here yesterday upset many, many people. We really didn't think that we were going to be pulled back into the 18th century, comparing deaf babies with Lebron James with that basketball analogy. It was truly insulting.
You cannot manage the grassroots people. The grassroots people, the people who have the experience need to feel comfortable, need to feel like they are in charge of making that movement go forward. We know the cochlear implant does not cure deafness or fix people who don't need to be fixed. So this is key. So those who are at the top of the movement, we need to see ourselves as resources.
Those people who really need the information may not have it, and you may have the information so you can share the information, so you must see yourself as a resource rather than as a leader of the movement. As I said, the grassroots community can't be managed, and they need to be encouraged to be activists in nonviolent ways. You want to encourage them to take that initiative.
When I talk about politics, politics have divided us for so long, and we need to really think about a new way. I know some of the political divisions can't be solved. Obviously the oralmanual fight isn't going to go away any time soon, but we need to kind of think about the issues in different ways.
Maybe there's an issue that really we agree on, and we can work together across those partisan divides to accomplish something, and that actually will have a bigger impact, and you can have dialogue across the aisle, so to speak.
You know, some people think, well, if you prefer spoken English and you prefer Sign Language, you should hate each other. Differences don't necessarily equal conflict. Somebody presented yesterday comparing the deaf baby to Lebron James basketball, you know that we can maybe work on a different issue together. This might not be the issue we can work on together but there may be other piece of policy.
There were some people who left yesterday, and because they were so upset, but leaving means you've given up your power. You need to be involved and active to make change, to bring make lemonade out of lemons.
If a parent is complaining that their child doesn't have appropriate measures in their IEP, and the school doesn't seem willing to make changes, you want to focus on the problem, and not make it personal. Respect is key. Anywhere we go, we are going to meet people who are different.
Speaking for myself, I remember, I speak 8 different languages. I do use my voice. Today, my friends so there are about 250 languages spoken in my country so let me just say that but spread out in different areas.
When my friends come to my home and my mom will school food for all of us, we'll be there speaking our language, and my friends who maybe aren't from that culture will learn from me, and then the next day, maybe I'll go to their house and eat their food and talk to their family and learn their language and their culture. And then a different friend in a different culture and a different language the next week and the next week.
On Fridays, I go to a mosque with a friend, and so I've learned Arabic Sign Language and I've learned about that religion. And then on Sunday, he joins me when I go to church. And that has been so helpful in becoming, for me in becoming someone who feels very accepting of diversity. We may not share the same values necessarily, but there maybe is something that we share, and we can certainly be friends and work together.
I don't want to see anybody limiting deaf babies to an either/or modality issue. Let's not limit their potential and their possibilities. The research shows that if babies are exposed to a diversity of languages, the brain will sponge that up and they will take off.
Obviously it's key to be openminded. Sometimes you feel that this is an issue that needs to be addressed, and many people will have ideas on how a specific issue can be fixed. You want to be willing to listen to those ideas and those opinions and those perspectives. There may be a way to merge disparate ideas to come up with something stronger.
Obviously you need to listen to people. People say, if you're slow to speak and listen more, the better off you'll be. You can't always see the good in other people if you're complaining all the time or talking all the time but if you take a moment to stop and really listen to what is happening for somebody, what their issue might be, what their situation is, then you actually can glean some good ideas for your own situation.
Sometimes people are very resistant, because they don't want to change. But if you can be willing to meet somebody halfway, to find out what's going on and be openminded, showing respect obviously is a twoway street but it's so important that you show respect.
We are here today seeing people who have cochlear implants, seeing people who are using ASL, seeing them socialize together. Rachel Kolb's plenary yesterday was just stunning to me because it shows the diversity that is possible in the community, and we welcome that.
When we try to make change or we try to fix something, we will always have challenges. That's not going to go away. You can't make change overnight. You have to start step by step. New problems may reveal themselves, and as you do that, then you want to find your paths.
And it's so important to build a sense of belonging, because if there's an issue on the ground, the key thing is to build those relationships. We're all in the same boat, we're all in this together.
No matter what kind of approach we might use, we want to find a way to solve this issue, and then you'll move on to the next issue.
You want to develop an organizational framework, and that's really important, because if you approach an issue with an organizational framework, then you can break it down to its component parts, and you can convince people. There are people who are at the policy level, people at the legislative level, and if you cannot articulate your agenda in a way that is persuasive, you will not be able to convince them. So you want to have the research that backs it up. You want to have the pros and cons ready, and you want to have answers prepared for the questions you're likely to be asked.
And people who have the same issues sometimes will tell you they don't know what to do, so part of your role is to empower people, to share resources and information, so that they do feel that they have the tools to go forth. And so that if they are questioned, they have the validation, justification, for why they're working in the manner they are.
So the next slide talks about sustaining tempos, meaning, it's like if you don't give fuel if you don't put fuel in your car regularly, it's going to break down, so you need to make sure that the issue that you pick to work on is something that you can work on in a sustainable way. Empowering people to continue moving forward, keeping the momentum.
One thing I want to share with you about the experience I've had in Missouri, we wanted to make sure that as bills were filed in our House, Legislature, that we would have a copy of it, even if it doesn't impact us. We get a copy of all the bills and we analyze ways in which it may impact the deaf community.
There's a group trying to file a bill in the legislative process to have the legislative process be online, to be accessible via the internet, and we didn't know if it was going to be captioned, so we reached out and we said, are there provisions for captioning to be done? And the answer was: No. And so we had to do some education about the law, that anything that's going to be on the internet has to be captioned, and if they had gone ahead without making that, we would oppose that bill.
Then they amended the bill, and then we were able to come out as a community and support their efforts, so you want to have a resonating story.
The message must be unified, and at the same time, people have to be able to put the message in their own words and share it.
It's important to set clear expectations. You need to communicate well and often. And you should share this experience with pictures, in social media, because if there's a similar issue, you want to make sure it's getting out there. I mean, nowadays people use Facebook and Twitter and people across the nation know what the issues are.
How do we articulate policy changes? When you have an issue, you've got to pick the right issue to work on, whether you're saying the kids are oral deaf or hard of hearing, that's going to take you down the wrong path. Look at what the issue is.
The issue is, we want a hearing aid bill, for example, for all people. Don't say that you want a hearing aid bill for this particular subset of people. You can make a change if you speak more broadly.
And the people who are empowered need to be continually learning. They need to know what's happening. So, for example, I went to the Legislature one time, and they were talking about an issue related to a budget bill, and I asked a lot of questions. They were asking a lot of questions, and if you're not prepared for that, you're going to get in trouble, so you need to be as educated as you possibly can, know the issue in and out, all the pros and cons of whatever it is that you're suggesting.
I shared the story about having the videos captioned online. When I spoke to that group and said, we're going to oppose your bill if you don't put a provision in there about captioning, we got the captioning provision put in. You want to cooperate with people and share power, but you can't really move on without exercising your group's power. You can't get ahead.
And of course, there are ripple effects. You know, you say, okay, if this happens, then X, Y, and Z will happen. We were sponsoring an SSP bill, that's a support service providers for deafblind individuals to provide some support for those deafblind individuals. We brought a deafblind person to the Legislature, and we hired an SSP from another state who was licensed in that as that provider. And they realized that this person needed those services, and many other states already have these services in place.
And so we said, if you pass this bill, we can get Federal dollars to support a program that will train and certify SSPs in our state. And you know states are always worried about the fiscal bottom line, so we were able to say, we'll bring in Federal dollars, and that helped greatly.