[NFB-DB] Family to Family Connect

Sat Jun 17 22:19:53 UTC 2017

Hello  Lisa and list. Lisa that was very well said and a most articulate  post.  since I  couldn't possibly agree more, I won't! Smile! Now, if they would  ONLY TAKE HEED! You guys ever feel like your shouting into a void? I CERTAINLY do!  That point you made about our inability to participate in these conference calls, I thought an especially telling one. It is  to my mind at any rate,  crushingly ironic that the people for whom these calls  are intended, and toard whom they are geared or so one assumes,   are often completely excluded from them!

Jack and Bex
Sent from our  iPhone
Jackzip65 at gmail.com

On Jun 17, 2017, at 3:57 PM, Lisa Ferris via NFB-DB <nfb-db at nfbnet.org> wrote:

>> I’m glad to hear this, Cathy. But it does not excuse the tone of the flyer and also of the website (NCDB). It is possible to work with families and help them to bridge the gap while also including DB people themselves. I’m totally fine with getting DB people and family members together to learn and grow and communicate better with each other. But by directing this at JUST families of DB as if they are “other” and we need special support to be able to deal with THOSE people, you perpetuate the gap. 
>> 
>> I think a lot of families do mean well and just don’t know what to do. But by framing your activities and conferences as a support group for US (families) who have to deal with THEM (those deafblind people) you just add to the notion that they hear all the time that we are the problem for them and our deafblindness is the problem. There isn’t even anything here to help DB people who may not be able to do a conference call without accommodations. Its not even brought up!
>> 
>> The NCDB website is entirely geared towards professionals and families. DB people are referred to entirely in third person! Don’t you think that a DB person, wanting to connect and learn more about their own issues and resources out there might ever come to this site? It sure doesn’t sound like it. And even if a famlly member or other intermediary are going to the site or participating in the conference on behalf of or in an interpreting/SSP capacity for a DB person, it should still be directed in first person toward the main stakeholders, the DB people themselves.
>> 
>> I, too, as a DB person had significant struggle with my family not supporting me and putting obstacles in my way. I think for disabled people this is an epidemic problem that no one talks about. I am glad your goal is to help with this issue. But you aren’t going to be able to help if you bypass people with DB when that is the problem itself.
>> 
>> I have a special ed background as well (M.Ed in education of children with multiple disabilities and deaf blindness) I know what a tightrope we with disabilities in this field have to walk in order to be treated as professionals and not clients/consumers. There is a lot of tension between disabled professionals and nondisabled professionals. But you cannot go AROUND and “other” DB people just because that is the way its always been done. I think there is a real opportunity for change here. But it can’t start like that flyer.
>> 
>> Respectfully
>> Lisa Ferris
> 
> 
> 
>> On Jun 17, 2017, at 1:36 PM, Catherine Miller via NFB-DB <nfb-db at nfbnet.org> wrote:
>> 
>> Lisa, Rox, Janice, and Jack:
>> This may surprise you guys, but I completely agree!  My family was the worst culprit.  Both my parents and my only sibling are deceased now, and I am still rebelling against the shackles of my childhood.  That is why I am trying to help parents and professionals to understand the capabilities of Deafblind children, to improve the future of deafblind people.
>> 
>> If you recognize, as I do, that parents and professionals are operating in a vaccuum, then you also know that they need advocates who are deafblind themselves, adult role models, and examples of successful deafblind adults to show them the possibilities.  They are not educated about deafblind people unless we extend ourselves to show them what deafblindness looks like.
>> 
>> The reason these families bond together in communities like this is because they are lost, they are confused and don't have any models for their child's future possibilities.  Yes, I shudder too, and I shuddered many times over the course of the series when I listened to these parents.  They need help, and they need hope.
>> 
>> If you are not interested in helping and in building deafblind community across the generation gap, then it's not for you.  please just ignore.  If you're one of those souls who are willing to extend themselves to teach others about the meaning of deafblindness, then the information is right here for you to explore.  If you put your foot in the water, you will find it warm with grateful families who are delighted that you have joined them.
>> 
>> Cathy
>> 
>> Sent from my iPad
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