[Colorado-Talk] Thoughts on the motto living the life you want.

[doula.jarboe at gmail.com]

Hi Jenny and All,
  It's always great to hear new voices.  From my understanding, the
Federation is made up of people from all walks of life.  And that the
organization is what its members make it.  I definitely understand very much
feeling like a minority or not supported.  However, this past Convention I
thought took into account what people wanted to have.  Especially with
asking for submissions for ideas of breakout sessions.  There were a number
of items this year done that I haven't seen in the past because of that
process.  I consider myself a leader in the organization, but even so, I
still sometimes feel like a minority, or a misfit.  Because, I'm also
someone who doesn't have a "normal" fulltime job.  I have a rare genetic
syndrome that makes me devote a majority of my time to managing medical
issues.  I also consider myself a home maker, which is another profession
that isn't exactly celebrated in this day and age.  But, I think living the
life you want means exactly that.  That you are doing what you want and need
to do to live and survive.  If you have ideas, or think there are things
lacking in the organization, then speak up, or take action.  Or, talk with
other members and our leadership and brainstorm how something might be done.
It always bothers me when I feel like people are complaining about the
organization, or asking why the NFB isn't doing this or that.  When we,
those of us who are members are who do the things that get things done in
the organization.  If you don't feel like it's important or helpful or
useful to be a member and participate, that's your choice.  But, I'll give
an example.  We've been needing a division for the hard of hearing and
DeafBlind for a good while now.  And with the help of others, that's
something I'm working on building.  This past state Convention, there was a
breakout session on inclusion of people of diversity.  I thought it was a
great session, and an attempt to acknowledge some issues that don't always
get discussed.  And, I'd love to see more dealing with diversity, because, I
think that would help those of us who don't feel like we fit in with the
more typical issues.  There are times that I do feel very much on my own,
because besides the other people I know who live with my syndrome, and spend
each day of their life fighting with medical issues to live.  Outside of
that community, I don't know many blind people who also have to live life
with the balancing act of figuring out food, and diets and meds, and all the
complications that go along with having a rare disease.  And, perhaps there
are more people out there who struggle with these types of things, but if
so, it isn't widely talked about.  I don't think the organization wants to
exclude people, or make them feel less or down about themselves.  But,
unless we do things to speak up, such things can't be shared and addressed.

Warmly,
Doula

-----Original Message-----
From: Colorado-Talk <colorado-talk-bounces at nfbnet.org> On Behalf Of Melissa
R. Green via Colorado-Talk
Sent: Sunday, January 1, 2012 5:42 PM
To: colorado-talk at nfbnet.org
Cc: Melissa R. Green <graduate56 at juno.com>
Subject: Re: [Colorado-Talk] Thoughts on the motto living the life you want.

Thank you to all that are sharing their experiences.
I appreciate it.
I am going to give it more thought.
Right now I have come up with a couple of questions.
How do we provide support to families?, sometimes people don't want feel
like a charity case. They are also wrapped up in going blind. As well as the
family members are grieving the loss of sight like their newly blind member,
and are dealling with their own misconceptions about blindness.
In what ways, do we celebrate those people who stay at home or volunteer,
etc etc?
Will write more soon. 




Have a enjoyable and blessed day.
Sincerely,
Melissa R.  Green and Pj
"If you have a goal, make it something you strive to accomplish. If you have
a hope, then hope for it with all your heart.  

----- Original Message -----
From: Sabndy Schleich via Colorado-Talk  <colorado-talk at nfbnet.org>
To: NFB of Colorado Discussion List  <colorado-talk at nfbnet.org>
Date: 01/05/2020 11:39 am
Subject: Re: [Colorado-Talk] Thoughts on the motto living the life you want.

>
>
> Hello Jenny,
> I really like what you wrote and I'm sure there are other people in the
same situation as you. You're right, I do think that conventions national or
state only seem to celebrate people that are working or are looking for work
or going to school. what about those people that are not doing those things.
I am a stay at home mother and I have never heard anything in convention
about stay at home parents. We are just as valuable to society as valuable
as people that work or are going to school. I did not start going back to
School until my youngest was in kindergarten, because I could be at college
while he was in school and I knew that I did not need to be at home to take
care of him. I know that not all parents have the option of being a stay at
home parent but I fortunately did, but the NFB does not acknowledge stay at
home parents. You're right Jenny, this is not a pity party, but I do believe
that the NFB should acknowledge other people that do not have jobs such as
stay at home parents and people that do volunteer work. Just because you
don't get paid for a job does not mean it is not a job. Raising children is
not an easy task and sometimes I think going to a job would be a much easier
task than raising three children. At least going to a job every day when you
come home you get to leave that job behind. Raising children is a 24 seven
job and it never gives you a break. Volunteer work is another way that blind
people can contribute to society. At least we're not sitting at home on our
butt doing nothing! I also believe that the NFB needs to have a association
to help support the families of blind people. I have friends that when they
got married they were cited and then they went blind later in  life and
their family does not understand how to help them. I think that the NFB
needs to have support for the family members not just a blind person.
> 
> Sent from my iPhone
> 
> > On Jan 4, 2020, at 7:38 PM, Jenny Perdue via Colorado-Talk
<colorado-talk at nfbnet.org> wrote:
> > 
> > "Dear Colorado talk,
> > 
> > Earlier in the month, Kevin asked us to write things about living the
life you want. Yes, I could've answered this privately. However, I wonder
though, if more people feel like I do then we know.
> > 
> > The national Federation of the blind motto is living the life we want.
Which, is a great motto. But at my very first NFB convention. I soon
discovered that living the life I wanted would never be laudedor celebrated
or even acknowledged by The national Federation of the blind either within a
convention, or, any other format.
> > 
> > Let me explain why I say that. I was born and raised in a time where if
you had vision you had to use it whether or not it was viable or not. So, my
education fell through the cracks even though I asked to learn braille
repeatedly over my education. I taught myself braille in 1999 at a
rehabilitation center for the blind in Daytona. By myself. With no help.
Just me and my determination to learn but I wasn't given the opportunity to
learn as a child.
> > 
> > There are a lot of us out there in the same position. I've heard the
stories. Oh you can do it, go back to school. Well, at 46 with maybe a six
grade education, having taught myself braille. And don't know Nemeth code.
School is just not an option for me.
> > 
> > OK, that's the backstory. Now, as a 46-year-old woman. I also have
health issues. So working is not an option for me. Which means, no mobility
training, no computer, no computer training, or anything else I might need
because I'm not valuable enough to receive training because I'm not working
or going to school or planning on doing either or.
> > 
> > So, now I come to my point. Though I have these challenges. And a lot of
us do. I volunteer at the Humane Society here in Grand Junction. As far as I
know, I'm the only blind person that I know anywhere in the country who was
allowed by a shelter to volunteer.
> > 
> > My Specialty is working with cats or kittens that have been traumatized,
or feral. Or for whatever reason that their behavior and trust and a human
being is not there yet. Which, has helped several cats and kittens become
adopted because I worked with them and taught them how to trust people
again. Or even for the first time. That's important right, that's valuable
right? But do we see that in our conventions. No.
> > 
> > We see John does a lawyer, we see DJane doe Jane doe has the most
successful DEP vending in the state. Awesome, kudos, wonderful things.
> > 
> > However, those people were given way more opportunities than a lot of us
are. What I do with the animals and others do for volunteerism is just as
valid, and just as important, and should be celebrated just as much as a
scholarship winner for college. I didn't exactly get that option. A lot of
us didn't. So why do we feel like If we didn't go to college, CCB, have a
successful career, we are not as respected or validated within the national
Federation of the blind community. And that includes nationally.
> > 
> > Bring in money and status does not make a person successful. It does not
prove that blindness doesn't have to be an obstacle. What proves that, or
people who do the best they can with what they got. What proves that is the
fact that for me, I'm the most well known volunteer at that shelter. I'm
also the one they come to before cat is adopted to say farewell. I'm the one
they come to when a cat is so Farrell or so frightened that it could lash
out, and I'm the person that they know will spend hours with an animal to
gain trust and make them adoptable.
> > 
> > The amazing thing is, people the shelter feel it's valuable, people at
the shelter see what a blind person can do, we are celebrated and
appreciated. They even bought a braille label order to label the signs so
that I would be more comfortable there The foster families for the animals,
the people that come in and look at adopting a cat or kitten, I know the
cats and kittens better than the adoption counselors do. Again, very valid,
respected.
> > 
> > The question is, why isn't that felt in the blind community within the
national Federation of the blind. It just doesn't.
> > 
> > I came out of that convention more depressed than I had ever been in my
life. Well, in a long time :com) I felt like my life didn't matter. Because
all the kudos all the celebration went to people who are successful. Who
don't have the health trials I do, who didn't have crap for education, who
don't even have a computer because we're not valid enough within broke rehab
to deserve one if we can't work. Have no equipment. No mobility training
since I went totally year and a half ago because I have too many health
issues to work but not too many to get training.
> > 
> > I'm not trying to sound like a pity party, because that's not it. I have
a great life. I just wish my life At what I do with it in the parameters of
health, lack of education, lack of computers, lack of equipment, lack of
training Was just celebrated.
> > 
> > I knew a lot of blind folks who have tons of opportunities who sit on
their butt and do nothing. And get everything they could possibly want as
far as equipment goes. Fine, I'm glad they can. But when the most prominent
and respected blind organization that works for equality only makes a huge
deal about people who are bringing in the dough, and have a status, what is
that exactly say to me as a blind person who is supposed to matter to the
national Federation for the blind.
> > 
> > So, I guess what I'm saying is, you can live the life you want, you can
also live the life you're dealt. And handling that stuff for Grace doesn't
seem to matter. So, I just figured I would express it.
> > 
> > I will never go to another convention. I already feel like I'm not good
enough sometimes, I most certainly don't need it in the blind community.
Much less and NFB. I am a member still, because I know that there are people
like me too. We may not get the notice of a credit, but we're here. I just
don't have to have it shoved in my face that I'm not important or valid in
in the organization.
> > 
> > I hope the other people who feel the way I do will read this, I hope
that you will know that you are important. You may not feel like it, you may
not feel that the NFB feels like it, but you are. We all are.
> > 
> > Maybe if we help each other out more, instead of shoving everybody's
success in the faces of people who aren't that fortunate People like me
would Feel like we were An equal and respected  part of it or like we
matter.
> > 
> > Maybe the NFB needs to think about those of us who still need to 
> > function in life. Who still need a computer, who still need 
> > training, those things don't disappear because you don't work. So 
> > instead of spending a bunch of money on conventions that celebrate 
> > everybody's good fortune and make quite a few people feel like crap. 
> > Maybe we should start helping those of us who didn't have the 
> > opportunities and make the national Federation of the blind really 
> > the voice of the blind. I haven't heard my voice yet
> > 
> > Jenny
> > 
> > Sent from my iPhone
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