Want to share your thoughts? Contact us at DBCoalition@gmail.com. Footage description and Transcript below:

https://www.youtube.com/watch?v=6dxJu20-eh0

Footage Description: 6:45 video of Jelica Nuccio (White Signing Woman with curly brown hair wearing dark rimmed glasses and a black open sweater over a black turtleneck). The background is a black backdrop.

Transcript:

Jelica: Welcome to DeafBlind Power [Power is signed as standing-up and then spelled out p-o-w-e-r].  I’m Jelica [name sign is Handshape y moving from upper left chest across to lower right hip] Nuccio.

A lot has happened since last Fall. There have been two major occurrences that we would like to share with you. If you recall, DeafBlind Power’s mission has consistently been firm in the belief that DeafBlind individuals are an important part of the process and we will not stop. We continue to be open and will continue to update you.

Now on to the two updates. The first thing we want to share has to do with the gathering last Fall, no I mean Summer, in Las Vegas for the DeafBlind Expo, which was hosted by Bapin. At the expo, DeafBlind Power set up a booth and had the opportunity to meet many vendors and interact with a lot of DeafBlind individuals from all across the nation. It was a wonderful opportunity for connecting with others. We also had the opportunity to share stories with each other, which was really healing. It was a wonderful place to be, where we could touch and feel and know that we have similar experiences.  During the expo and following the expo we have continued to collect stories from DeafBlind individuals (vlogs), plus emails so that we can stay in touch. We also gathered a large number of signatures in support of the petition asking that legislatures take action to provide for more options for DeafBlind people to receive services/training than just the one option of Helen Keller National Center (HKNC).

You might know by now that it has been written in the Appropriations Budget that Congress automatically gives a large sum of money to HKNC every year, and those funds are not available to any other potential training programs. We firmly believe that this funding should be available for competitive grant applications in order to give DeafBlind people more choices, which would better meet the specific needs of DeafBlind individuals.

The petition is still online at www.deafblindpower.com, the same address as before, and you can still add your name. We will continue collecting signatures. So that’s the first of two updates.

Now on to the second update: what’s up with HKNC? We have been asked if there is any news and yes, many things have happened. First, last Fall, around November, it was announced that the new Executive Director replacing Joe [Name sign J handshape brushing against mid-chest twice] McNaulty would be Sue [Name Sign S handshape tapping against mid-chest twice] Rudenski. This news was upsetting for many DeafBlind people, who did not want yet another hearing, sighted person in the position, who would not understand our needs and would maintain the status quo when there is a dire need for systems change within HKNC in order to provide optimal, efficient, and equitable services to DeafBlind individuals. Even though members of the DeafBlind community expressed that they did not want Sue at the helm, she was chosen anyway.

In addition, a new position was added and announced at the same time – Associate Executive Director. A DeafBlind man was hired for this position.  This position reports directly to Sue, to give you an idea of the organizational structure.

Also, more DeafBlind individuals were hired on an administrative level, and administrative level positions include regional representatives.  Regional representatives tend to oversee specific areas, like the Northeast/ New England area, Illinois/ Midwest area, the Northwest, which would be Washington and Oregon, and so on. So more DeafBlind people are now Regional Representatives. Also they added, no replaced, one of the supervisor positions in the Independent Living Department, replacing the former supervisor with a DeafBlind individual.

We want to applaud the decision to hire more DeafBlind individuals in higher positions. This is an important step. Now, oh wait, one more thing- they also added a DeafBlind woman to the Helen Keller Services for the Blind (HKSB) Board. Now you might be wondering, why HKSB? That’s because this board oversees HKNC, which does not have its own Board.

Now we are wondering: will those new hires lead to a much needed internal systems change? That is our biggest concern at this time. We are keeping an eye on HKNC, and are unsure of what to expect at this time because the overall internal (not recruitment positions) leadership, policies, services, quality, environment—has not been changing or improving. The types of improvement would result in a DeafBlind friendly environment where DeafBlind space is respected and individual concerns are immediately addressed. The complaints that we have seen have not gone down, giving us the sense that changes are not being made where it counts.

We continue to stand with the many DeafBlind people who have been through HKNC and have come forward with stories of how they were harmfully impacted by the poor services at HKNC. We very much care about those individuals and want to ensure that similar things do not happen to other DeafBlind people- which is why we continue to fight for more options for services and training than just HKNC.

If you want to share your testimonials with us, we continue to welcome stories. You can contact us at DBCoalition@gmail.com.

So that’s the updates we wanted to share with you. The work is far from finished and we will continue to pace ourselves. We need to continue supporting each other to prevent burnout.

Also, if you are someone who is adept at working with legislative type of work, if this is something you are motivated to do, please contact us to find out how you can help us. We look forward to further steps throughout 2015! Thank you!

End transcript.  

Greetings, Everyone!
As many of you know by now, HKNC recently announced that they have hired Sue Ruzenski for the position of Executive Director of HKNC. In addition, they also announced a newly created position: Associate Executive Director and hired Chris Woodfill for that position. 

There are mixed reactions to this announcement; even for members of DeafBlind Power. 

At this time we are not clear on how hiring an Associate Executive Director (a position that we are concerned was created without due process, which would have given all DeafBlind individuals the opportunity to apply) or Sue Ruzenski as Executive Director will help resolve concerns about internal problems at HKNC. We are concerned, additionally, that this position was created as a distraction from real concerns with hopes that the DeafBlind community would be happy about the news that a DeafBlind individual was hired to a higher position and would stop pushing for improvements. 

Our priority has been and continues to be ensuring that there are total improvements made to systems, policies, and staffing within HKNC with the hopes that DeafBlind individuals receive optimal services and are no longer oppressed by staff and administrators at HKNC. Hiring Sue Ruzenski as Executive Director when she has been a part of the problem for years does not inspire confidence that things will change. 

We will continue to focus on advocating for additional choices for services so that DeafBlind individuals are not stuck with HKNC as their only option.  

Our next step continues to be working with legislators to make necessary changes in order to open up the process so that a wide range of service providers can apply for funding. 

Recently an announcement went out about the Executive Director Position at HKNC. Our statement is coming soon. 


We also have a few more video testimonials coming. We are waiting for the video transcripts to be completed. 

Footage Description: A woman #2 is on left and is a bit out of the screen shot, but can see her hands and arms.  A woman #1 with short gray hair has lightly tinted glasses and sunglasses on top of her head wears white with light blue and gray plaid short sleeves shirt.  They are doing an interview mode via tactile signing and Pro-Tactile. 

Transcript

Woman 1: Ok, what do I do now?

Woman 2:  Ok, do you mind to introduce your name and where you are from?

Woman 1:  Wait a minute.  First, I say my name, right?  Two periods of time….ok.  Back to 2006 and 2013. 2006 situation has similar situation as 2013 situation, but 2013 situation is worse one.  Umm, do you want me to share about the time period of 2006 and 2013 when I attended the HKNC or what? 

Woman 2:  In terms of timing of this interview, I think it is probably best to share your recent experience - 2013.

Woman 1:  Oh, ok.  Just one period of time from last year, 2013, but, not 2006.  That’s fine. 

Woman 2:  So, please state your name, then share your experiences with us.

Woman 1:  Ok, my name.  I will state my name.  I have Usher’s Syndrome.  Is it ok to say that I have Usher’s Syndrome? 

Woman 2:  It is up to you to say what you want. 

Woman 1:  Ok, my name, then share my story, right? 

Woman 2:  Yes, state your name, then share your experiences.  After that, the interview will be ended.

Woman 1:  I got it.  (smile)  I am clumsy and I need more practice for this interview.  Anyhow, please let me know when it is ready for me to share my story. 

Woman 2: (gentle taps on Woman 1’s shoulder)

Woman 1 = Josefa:  My name is Josefa Gonzalez.  I myself am a legal DeafBlind.  I experienced my time at HKNC.  I attended HKNC from May 28, 2013 to July 3, 2013.  What happened was that at the residence hall, the food service was terrible.  Some of food came with green color and tasted old.  It caused me illness including diarrhea.   Anyway, I tolerated eating this food as long as I can.  

I attended to school to learn reading Braille.  My schedule for classes didn’t give me adequate amount of classes that I need to take during the week.  Before I arrived at HKNC, at home, I was informed that the Braille class will be offered frequently during the week.  However, this was not case when I arrived at HKNC.  Two times per week for Braille class, in my opinion, was an insufficient amount of time.  The length of the Braille class took 40 minutes which was brief.  I was disappointed that the length of class didn’t give me adequate time to be able to learn how to read the Braille. 

The teacher for Braille class didn’t have experience in teaching.  The teacher was incompetent with teaching technique for reading the Braille.  I struggle trying to read Braille and my friend taught me the correct technique which I finally figured out how to do.  Anyway, I wanted to learn computer which is called Braille Note.  The staff at HKNC said that I must learn how to read Braille on the book before learning how to use the Braille Note.  To me, it didn’t matter which book or Braille Note to learn how to read.  I took up a fight and stood by my request.  HKNC gave in at last to comply with my request.  The schedule for June 1st was already set, so they were to make some changes with my classes for my next schedule.  I was excited and waited for this opportunity.  When my schedule was ready, my Case Manager handed it to me.  I became furious learning that my schedule remained the same as previous ones.  I told my Case Manager that I didn’t need a job since I am a homemaker myself.  It was important to me that I became expert in reading the Braille.  My main concern is that when my vision will become worse rapidly before I become fluent in reading Braille.  It didn’t make any difference to my Case Manager.  I explained to my Case Manager that I already shared my request to Sue Ruzenski, Director of Direct training (name sign: “S” on the middle of chest, repeatedly several times).  The Case Manager acknowledged and that was my schedule is as is.  I became very angry and met with Sue and she apologized and proceeded to make some changes to my schedule right away.  When I received my modified schedule, I accepted it with reluctance and was ok with it.  I thanked Sue and left for home which was for the Independence Day holiday. 

By 2 pm as on the day of my class had completed, I walked to the residence hall and I bumped into residence supervisor named, Tom Burke and his name sign is T-B in neutral position.  I didn’t have a good rapport with him as he continued to pick on me.  He never interpreted for me.  There was a group of people with Usher’s Syndrome and sighted ones.  I couldn’t catch any conversation because I couldn’t see them too well. He left me out by not interpreting the conversation.  I repeatedly asked him to interpret the conversation and he continued to ignore me.  I became enraged for not being included.  I bluntly told him that he was supposed to interpret for me and he must stop leaving me out.  He apologized and proceeded to do tactile interpreting for me with reluctance. 

It was not only one incident, but many unpleasant incidents.  One incident involved the toilet paper in the restroom.  The quality of toilet paper was cheap.  It was separate toilet tissue papers, not a roll, so I had to take some of it in large quantity.  It was challenging when I was ill with diarrhea as I mentioned previously about the spoiled food.  So, with separate tissue papers in a bundle instead of wrapping the toilet paper roll around hand, it was a lot of work to ensure that the paper covers my hand completely.  I noticed the disgusting odor emitting from the cheap separate toilet tissues.  It was not a pleasant experience, I am telling you. 

After end of the service, I went up to Tom Burke to make a suggestion about quality of toilet paper by replacing it with mid-weight toilet paper roll instead of cheap toilet tissues.  Tom said, “Oh”.  Next to him, a person named Eileen and her name sign is “E” with lightly shaking sideway, she was a deaf staff.   She insulted me by saying that I should to buy myself some “luxury” toilet paper.  I became perplexed by her comment.  I explained to her that the money came from the state, so there should be some money to upgrade the quality of toilet paper.  Therefore, HKNC was responsible for that.  She laughed at me.  Tom saw what Eileen said and added to even more insulting by saying that my personal groin area smelled awful.  I became very upset and left them immediately to go to my dorm.  I packed my stuff in my luggage in tears.  I myself am a sensitive person because of my gradual vision loss due to my Usher’s Syndrome.  I deal with my frustration on daily basis. 

After packing my luggage, I returned to Tom and confronted him that he wasn’t being nice and what he said was very insulting.  Tom became angry and stood up.  I became frightening and ran out of the building to get away from him.  On the bench, I cried hard and threw up as well.  I really wanted to go home as soon as possible.  With my sighted guide, we were ready to leave for me to go home.  I saw Tom in his car.  The view of him caused me some distress, so I threw up some more which made my illness an even more unpleasant one.  So, my guide and I left instead of going with Tom because he was the original plan as my guide before the change other than dropping us off.  I was still crying about what happened.  My guide was quiet.  I told my guide how horrible Tom was.  My guide remained neutral about that.  I was frigging ANGRY about that!!! 

Anyway, when I returned to the residence hall, I told my roommate about the terrible recent incident.  My mind was made up that I was finished with HKNC and was going to quit for once and all!  That is end of my story with you all.  It was an absolutely terrible experience for me. 

Oh, I forgot to add one thing.  My Case Manager gave me my schedule for July.  In my mind that my request for more Braille class will be added; on Mondays, Wednesdays, and Thursdays with one hour extra.  I was excited with an anticipation.  To my shock, I learned that my classes are mostly cooking class which involved training me how to cook.  I became very upset and angry about that one.  The Case Manager asked me to hold on.  I didn’t want to deal with that anymore, so I ran to a different female from Vocational Department, Peggy who have MD (muscular dystrophy).  She has some problems with “MD” and she is hearing and signs well.  I was crying in front of her.  She asked me what happened.  I showed her my schedule and she looked through it.  She wasn’t happy.  Peggy asked for my Case Manager (name sign: “S” tapping on middle of chin sideway in one direction repeatedly) and called for my Case Manager to come to see her.  Peggy informed me that my Case Manager has arrived.  I glanced around and found my Case Manager, then looked away.  I wasn’t very happy to see my Case Manager.  It meant to me that I may have to go with my Case Manager to discuss.  I thanked Peggy for her time and had a side conversation asking her to keep to herself about our conversation.  I said, “Good-bye, see you later” to Peggy.  Then, I changed my mind wanting to say something more to Peggy.  Then, Peggy saw the whole incident between my Case Manager and me.  My Case Manager grabbed my wrist harshly to take my attention and wanted to speak with me via tactile signing.  It frightened and shocked me by what my Case Manager did to me.  My Case Manager tactile signed to me in angry and harsh way.  I told my Case Manager, “Stop, what is wrong with you?  You should not abuse me this way!”  I became angry and cried at same time because I am sensitive person.

Also, an ophthalmologist’s recommendation for my eyeglasses, its quality was horrible and cheap.  I complained that I cannot see well out of them.  I told my doctor that the eyeglasses needed to be replaced.  My doctor said it wasn’t possible at all.  It was waste of money which was paid entirely for my eyeglasses coming from a state commission named Massachusetts Commission for the Blind, MCB.  I shared my terrible experience with MCB and they didn’t believe me.  I have to accept that.  Thank you for taking your time to hear me out.  That’s all for now.  Hope you will support us protesting against HKNC.  Thank you!

Woman 2: Thank you for sharing your story.  I am curious if you will give us your permission to allow us to post your story on our website?  (Josefa turned around to woman 2 and used two-hands tactile signing as a signal to clarify what woman 2 was saying.)  Can we post your story what you just shared on website, deafblindpower.com? 

Josefa: I am sorry, I do not understand clearly.  (Turned around to get a better position with woman 2’s hands)

Woman 2: Ok, I will repeat.  What you recently told us which you just finishing telling us.  Is it ok if we put up your story on website? 

Josefa: I absolutely do not mind at all!

Woman 2: Ok, all right!

Josefa: (nodding head)

Woman 2: I just wanted to make sure.  Thank you and I appreciate that.  Now, I need to press a button to stop recording.  Hold on.    

Image Description: A woman is on left and is a bit out of the screen shot, but can see her hands and arms.  A man with glasses wears a black t-shirt, white baseball cap, and black backpack.  They are doing an interview mode via tactile signing and Pro-Tactile. 

Transcript:

Woman: Ok, please let people get to know who you are, please introduce yourself by stating your name and who you are.

Scott: Hello, my name is Scott Seigal. 

Woman: Where are you from?

Scott: Around Los Angeles, California. 

Woman: Yeah, cool.  I wonder if you would share your experience at the Braille Institute of America with us. 

Scott: The institute has an acronym which is known as “BIA”. Presently, it offers very limited services and very few options with classes for the DeafBlind people.  They do not have any special braille computer equipment for all DeafBlind and hearing blind people.  It is because of lack of funds which will not permit them to purchase equipment.  There are no classes for any DeafBlind people on the special braille computer equipment.  Now, the new president of the institute is more interested in providing services to the hearing blind people and doesn’t make any effort to include the DeafBlind people.   BIA has a very good and wonderful group of staff workers working with the DeafBlind people.  For example, a person named Jane Lutz, she keeps trying her best to offer more and better services and classes for DeafBlind students.  However, she is stuck due to BIA’s new President Bill’s decision which does not permit all staff to go to any social events or meetings where blind or DeafBlind people attend.  I wish Jane could come and learn more new experiences, but her boss said that staff are not permitted to attend.  Therefore, all staff are not able to attend to any blind and DeafBlind conferences/meetings in this country.  I would like to see BIA to change and improve the offering of additional classes for the DeafBlind people including more training on the special braille computer equipment.  Thank you for listening about my idea to improve the services at BIA for the DeafBlind people.

Woman:  Very good.  I am curious if you receive a large amount of money to invest, what program would you wish to see established that will meet the needs and support for the DeafBlind people.    

Scott:  BIA doesn’t receive any funding support from the government.  I have no idea where they receive the private funding and grants coming from.  All board of directors are very tight lip-sealed.  I have no idea what the budget looks like. 

Woman:  Thank you.  I am curious (Scott raised his hand to wave at someone behind the camera) if I have your permission to share our interview video on our website?

Scott: (smile) Yes, that’s fine. 

Woman: Thank you (smile).  Ok, please shut down iPhone.