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

[Jenny Perdue]

Hi, thank you so much for your reply.

As someone has a lot of health issues too. I totally relate.

I was reluctant most of my life until recently to join the NFB because of what I saw at convention. Because we’re already the minority, we shouldn’t have to feel like we’re a minority in a place that is supposed to be RC paving and help us.

I was unable to do the diversity meeting because of such health problems.

When exactly are we supposed to talk to the heads of leader ship. When they’re not doing NFB related stuff, when they’re not so busy they don’t answer their phones. I have tried to speak with leader ship. Have a God to President Riccobono know. Because I’m not sure that he would even answer the phone anyway considering that most leaders that I’ve dealt with don’t. Answer their phones

Also, I have spoke with leader ship about some serious issues that haven’t even been dealt with. That is when I could get to speak with them.Most Most could only find the time to email me.

Leader ship has to be both available, and, it has to be willing to do something. Not just placate you a

Leader ship has to be both available, and, it has to be willing to do something. Not just placate you and tell you they’re going to fix things that need to be fixed and then do nothing.  

Jenny

Sent from my iPhone

> On Jan 5, 2020, at 6:26 PM, Doula Jarboe via Colorado-Talk <colorado-talk at nfbnet.org> wrote:
> 
> 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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