The Raw Emotions


Sometimes, I just wish I could blend in. Folks, my emotions are pretty raw right now. I waited 9.5 hours from when I was super emotional about all of this to start writing but I’m still pretty raw. This is not a pity post, this is a “let’s get real” post. I have had stuff go on in the past and wanted to write one of these but then didn’t. Most days, I am proud of who I am, blindness included, so didn’t want to give off a different impression, whatever that may be. But fortunately, I am part of several online groups that have shown me that it IS okay to say blindness sucks sometimes and IT is okay to feel how I’m feeling.

I’m working on unpacking why my emotions have been so off this week and why a lot of things that are inherently involved with living with blindness and the guide dog lifestyle have affected me more than normal. I’m still working on this but this is what I’ve figured out so far..

A state agency moved into our office building this week. This was supposed to happen in April, then May, etc. We have a few office spaces and a lot of cubicles available and so they moved in. Change is hard and we had a pretty developed office culture. Now, we have to be a little bit quieter when out in the hallways, etc. Not a big deal, but still a change. With the move-in came a lot of people who left tons of carts and boxes in the hallway and absolutely did not understand about service dog etiquette.

A few months back I went to the Emergency Room because a staff member left a filing cabinet open and I went full force into it. I don’t always have my guide dog with me when going around the office. She stays on her comfy bed while I do what I need to do. Since then, our office management has been really pushing for people to be more cognizant of safety in the office, not leaving things in the hallway for not only myself but the other co-workers and consumers with disabilities, and making sure things are properly closed/taken care of. Now, I know it’s inevitable that while moving in things are going to be in the way and out-of-place.. but it’s still really stressful. Especially when I open my office door and there are things blocking me from getting out, etc. So that heightened my anxiety level this week.

Then there was the obsessive petting of my guide dog. Makiko is a very friendly dog and so I am very conscientious of who I let her say hi to and when. Almost every time when I’m walking up and down the hallway this week, someone from this other agency would try to do a sneak/drive by pet. Sometimes they would come into my office while I was at the copier, etc., to say hi to Makiko. Sometimes I would be getting ready to go and they would call Makiko. Sometimes even they would try to call her from across the hallway. I started by asking them not to distract/pet/call her. I also ignored them sometimes and gave them the “cold shoulder”. I even sternly said “That’s not ok” and explained how her focus on me is essential to her job and my safety. But it still persisted. As I posted on my Facebook, my tolerance for this kind of thing this week has been limited. I tried the education route.. didn’t work.. at least up until that point. Management scheduled a meet and greet for this morning so all night last night I was thinking of the phrasing and delivery for how I was going to efficiently and effectively express that distracting/petting/calling her is NOT ok. I found the Access and Etiquette brochure on Guide Dog for the Blind’s website and sent it to my work email to print. I had already told my management about the issue as well. I came up with what I was going to say in my head. Around 9:30am, I printed 15 copies of the Access and Etiquette brochure and placed them in the conference room. At 10:00am, the announcement was made to head to the Conference Room for the Meet and Greet. I harnessed Makiko up (even though she isn’t always harnessed for just walks around the office) and headed that way. One of the building managers stopped me and asked if she could pass the brochures out. BINGO! I said absolutely and advised her that our office staff already knew everything on there. She passed out the brochures and explained that everybody needs to be aware of this kind of thing. Then a few minutes later one of my awesome managers also made an announcement about BOTH the obstacles issue and the service dog issue. When it came time for me to introduce myself, I said a few sentences about appreciating them not distracting her, calling her, or petting her so that she can keep me safe. They seemed to all understand. THANK GOODNESS!

At this point though, I think my anxiety was already pretty high and i just didn’t realize it. I went back to my office to work for a little bit but then somebody said a few things that while directly didn’t appear to have anything to do with my disability, indirectly, they did. I was expressing how I had so much paperwork to go through and then comments were made that upset me, even though they were teasing. I’m not going to go into them here though because I respect this person very much. The point is.. why did they upset me?

I’ve been unpacking that all afternoon in my head and I think I’ve figured out most of it. I appear sighted. If I didn’t have my guide dog with me, you truly would not know that I had a visual impairment. I do not fit what society has in their minds of what someone who is blind looks like. With that being said, I do utilize specialized equipment and do need assistance in several areas, but most people don’t see this. People don’t hear JAWS or my screen reading software because I have a headset in or am behind closed doors. People don’t see me using my PEARL camera with OpenBook to read printed documents that are hard because it just looks like I’m using my computer.. etc. But what they don’t realize is that what would take a sighted person 15 minutes to go through takes me about 35 – 40 depending. And, if you know anything about state government work.. you know there is always a TON of paperwork. So that pile of paperwork which is of significant size is even more significant to me because I know how long it is going to take me to go through it.

I continue to lose my vision. It’s not fun, but I deal with it. Pretty much everybody that knows me well or spends a lot of time around me, knows my condition is degenerative. But it’s not like I’m going to go up and provide periodic updates – “Hey hey! My vision has declined again.” I would be doing that all too often, unfortunately. And I do get it, that because I don’t appear to be that impacted by my vision loss on a daily basis based on what other people see, they don’t remember or don’t think about it. I don’t blame them.. but sometimes I just wish they would. I don’t need them to pity me or constantly worry about helping me, I am pretty dang good at self-advocacy and will ask for help when needed. I just wish they would keep in the back of their heads that I am visually impaired. That I have really very little sight and that simple to complex tasks that require sight take me a lot longer and can be very tiresome. (I’ve been thinking about trying to do my own simulation of how I see.. but gotta think about how to execute this). And if we’re being perfectly honest here, the thought ran through my head.. if I wore sunglasses… they probably would treat me different… because that would be their constant reminder that I can’t see very well. But that just is due society’s image of what blindness looks like and I don’t need nor want to use sunglasses all the time.

As I was thinking about writing this post and then as I was about to hit submit, a thought came to mind.. what is the solution? One of my really close friends and a counselor that I have the utmost respect for always likes to discuss solutions. So if there is a problem with something and she brings it up to that person, she likes to have a solution in mind of how to fix it. I LOVE this approach and have tried to keep it in the back of my head more often. So how can I fix all of the above? Well, with people petting her, etc., I hopefully have addressed that in the workplace. Out in public we don’t have this issue because I’m a little more stern with the public. With the obstacles issue, I might start working my guide dog in the building when there is a lot going on in the future and I will be a little more vocal if there are persistent problems. With the people being more aware of my blindness, I’m not exactly sure how to tackle that issue. I don’t really hide when I utilize my equipment, etc., but it’s not exactly obvious either.. I might stop working so hard to make it less obvious and just let it be. For example, in group meetings, I may not utilize something necessarily to make a document accessible because I don’t want to stand out.. I guess that’s an adjustment thing.. I will be working on that.

As I’ve said, I don’t want people to treat me any different.. I just want them to understand and respect that I am blind, I do have to do things differently, some things take longer, I am human and will get frustrated, and that’s okay.

All in all, most days I am just fine and adjusted to my disability. But I do have experience the rare day where I wish I could just blend in the crowd and not be stopped six bazillion times a day due to my guide dog, not have to deal with worrying about obstacles, not have to deal with the stigma, and not have to deal with a largely inaccessible world.

And that’s okay.

My Blindness Doesn’t Make Me Inspirational


I was diagnosed with retinitis pigmentosa at 14, but didn’t really start acknowledging the diagnosis and visual impairment until around age 20. That’s also when I started to hear that I was an inspiration. At that time and for a few years after, I didn’t really care; in fact, I thought it was sweet and a compliment to my ability to persevere and keep moving. But after learning about inspiration porn and getting told I was an inspiration many times when I was just doing average joe activities, I started looking at things a little differently.

Inspiration porn is when a person without a disability thinks a person with a disability is inspirational just because they live with a disability. That’s it… just them living is the sole reason they are called an inspiration.

Living as a blind person with retinitis pigmentosa is not inspirational. Most people would continue to live if they were diagnosed with such. Going through what I have had to go through to continue to live the life I want to live, taking orientation and mobility lessons and using adaptive technology is not inspirational. I did what I had to do to survive.

I am OK with you thinking the perspective I have taken on disability, the advocacy work I do related to disability, and the amazing opportunities I have been given and embrace are inspirational. But just because I continue to keep on trekking through this thing called life with a disability — that’s not inspirational.

As featured on “The Mighty”: https://themighty.com/2017/04/dealing-with-inspiration-porn-as-a-blind-person/

How I’m Navigating the Five Stages of Grief With Vision Loss


It always happens… I’m doing well, I adapt to another period of vision loss, not much time goes by and there it is again… sneaking up on me when I least expect it. This is my life with retinitis pigmentosa (RP). RP’s progression can come in many forms. For some, it’s very rapid vision loss very early on in life. For some, there are periods of vision loss followed by years and years of stability. For some, vision loss progresses veryyyy slowly through the years, and then for some, vision loss goes unnoticed for many years until diagnosed later in life.

I was diagnosed at 14. I am now 27. Looking back, I can recognize different incidents that were a direct result of night blindness or limited peripheral vision, but I wore glasses and did OK vision wise. I didn’t know I had any problems until my eighth grade year, age 14, when I started having all sorts of medical issues and was eventually diagnosed with RP.

Many people in the blindness community have debated whether it is easier for one to be blind from birth or be partially sighted/diagnosed later in life and lose vision over time. Since I’ve never experienced what it is like to be blind from birth, I can’t exactly compare. I’m sure there are “pros” and “cons” to both. However, in terms of emotionally adjusting to vision loss, it seems to me that being blind from both would be easier.

With RP, you go through many different stages of vision loss, unexpectedly. It’s not like there’s a signal that goes off that says “OK, you’re going to lose more vision.” No, it’s more like, “Ugh, I can’t see that and I know I would have been able to see that a year ago,” or “Sigh… I sure am falling a lot more… I think I’ve lost more peripheral vision.” One has to continuously adapt and acquire more blindness skills, including adaptive technology, orientation and mobility, and independent living skills, many times in their life if they are living with RP.

Many people when they are adjusting to a disability go through the grief cycle: denial/isolation, anger, bargaining, depression, and acceptance. Overall, I feel like I’ve reached the “acceptance” stage but can remember when I was in the “depression” stage, especially when I felt like it was affecting friendships and definitely had affected my self-confidence.

With RP, many times when your vision loss progresses more, you experience at least part of the grief cycle again. For example, when I started the process at 16 and then 18 of getting my driver’s license, my vision loss wasn’t as progressed as it is now, but I probably didn’t quite realize how bad my vision was. I kept my drivers license until after I got my guide dog and then realized it kind of looked funky to have a driver’s license with a guide dog. I was sort of in denial for a while that I wouldn’t ever drive again.

One of my very first instances of denial was when I got diagnosed. I was in 8th grade, going through a lot socially and medically, but when we figured out all this was because of RP, things settled down a bit but I didn’t really care. I would tell people I had RP but I just brushed it off. It was just a name to me, nothing else. I didn’t really get accommodations, didn’t get special assistance or mobility tools. I just had some trouble with tripping over a lot of things, falling down and up stairs, and difficulty transitioning from light to dark and dark to light. I didn’t fully start realizing something was amiss until I was in one of my classes in high school and I couldn’t participate in one of the class activities, taking notes while watching a movie. The lights were off and my notepad just disappeared… I was that night blind.

Occasionally, I have been angry about the inability to drive thing, and subconsciously I think I was angry in parts of college when I didn’t feel comfortable going out at night but saw my peers going to parties that seemed fun. I remember when I finally got invited to one of these parties, I was with some attractive young men and a girlfriend and I tripped a little bit and fell in some mud. I managed to catch myself with my hand so it wasn’t on my clothes, but was all over my hand. I didn’t want these cute guys knowing so I managed to hide it and then sneak in the bathroom when I got to where we were walking. I was a bit angry, and embarrassed.

I’ve been fearful a few times, like when my mother who was a huge support moved away and I had to be more independent and rely on others more for transportation assistance. I don’t know that I’d take it to the level of “fear” but I’ve often wondered how I would navigate some of the aspects of parenting, if/when I do become a mom. Luckily, I have amazing blind mom role models that I can look to for advice in this area.

I’ve grieved some of the things I can’t do as easily anymore or can’t enjoy as much anymore. My boyfriend really loves to go to movies, but I have to sit in the exact right spot to get as much of the screen in my limited tunnel vision, but not too far away from the screen that my visual acuity becomes a problem. My eyes also easily fatigue in movies because I have to move my eyes so much to catch what is going on. My boyfriend understands and never pushes the issue, but it does kind of suck that it is such an ordeal.

My life is very fulfilling and quite amazing. I have had a lot of opportunities arise because of my journey as a person with vision loss and the different paths I’ve taken. I am not fearful of RP at this point. I embrace it, and it is part of who I am. I have a lot of supports in place for when I do experience more vision loss, and have an excellent employer and supervisor who understand disability and value me as a person. They are patient and willing to help. However, I do have days where I am frustrated because I am a little bit slower or can’t go at the fast pace I like to live my life, because I have to re-learn or adapt to a new part of my vision loss.

I am now a counselor and recognize that going through the grief cycle is healthy. Not everybody goes through all five stages, and sometimes people make steps back. I know many times myself and fellow RPers do when we experience more vision loss — and that’s OK! If you are going through the grief cycle, whether it be with vision loss, disability, or something else, I encourage you to be patient with yourself. Know there is no right or wrong way to grieve, and it will take time. But you need to allow yourself to do it to move on; covering up your pain and grief will only prolong your struggle.

As featured on “The Mighty”:

https://themighty.com/2017/04/navigating-the-five-stages-of-grief-with-vision-loss/

Thank you for giving me my life back


Dear Makiko,

Four years and two weeks ago today, I laid my eyes upon you with your gorgeous brown eyes and black fur. We went through very rigorous training and exactly four years ago today, we walked across that stage at Guide Dogs for the Blind and officially became a team. Little did I know at that point just how much you would change my life. You’ve wagged, cuddled, and kissed your way into the hearts of so many people.

Makiko, you’ve enabled me to do what I love to do. My job as a transition counselor is incredibly busy and we travel A LOT. I don’t think I would have been able to keep doing this position, or I don’t know that i would have even applied to it, without you sweet girl. You give me the confidence to be okay with going new places independently and venture into the high schools which look like colleges. This confidence can be seen in many areas of my life – I am spending less time at home and more time out and about, socializing, volunteering, participating in community events, and being me.

I may be a bit biased but I think you are one of the best looking guide dogs out there and your sweet face just melts everybody’s heart. People want to come up to me and ask me about you and of course, I love to tell everybody about how amazing and beautiful you are! This has led to many new friendships and connections… relationships I know I wouldn’t have made as a cane user. You have opened many doors for me.

Because you have been such an life-changing guide dog, I have wanted to continue to give back to Guide Dogs for the Blind and become more and more involved in this selfless community. Because of you, I have the opportunity to travel and meet people, sharing about Guide Dogs for the Blind. I have the opportunity to help raise funds and introduce the guide dog lifestyle to many other individuals with visual impairments. My public speaking skills are steadily improving and I’m becoming more confident in this area, an area that I have struggled in for many years. I have co-founded and become the Co-President of “The Eyes of Texas”, the Texas Alumni Chapter for Guide Dogs for the Blind, where I have had the opportunity to meet so many incredible graduates with guide dogs across the state. I founded “Guide Dog Handlers Network,” a Facebook social support group for guide dog handlers from all over the world and we have had the opportunity to be there for each other and brighten each other’s lives. Because of you, I have a new amazing community that I have the honor of being a part of.

Because of you, my gorgeous girl, my wanderlust is back in full swing and I want to travel with you by my side because it is SO much fun and I feel totally free when traveling with you.

I am much safer with you by my side, leading the way with me holding onto that harness handle. I’ve had many surgeries and casts through the years due to falls or accidents due to my vision loss. One of the worst ones was when I didn’t see a particularly icy patch in Tulsa when I was going to school there and fell on it, unable to get up. One torn meniscus surgery and a lot of therapy later, I am doing just fine. I am proud to say that while working you, I have not had one vision related accident. That is HUGE. You’re a star at “intelligent disobedience.” If I tell you to go and you think it’s not safe, you will do everything in your power to tell me, “No, Mom.. really.. NO,” and will show me the safer route. You can be quite stubborn and I wouldn’t change that for anything.

You’ve helped me become much more physically fit and active. 5 years ago, I would have never dreamed about wanting to exercise. However now it’s a definite goal and I WILL make it happen. Through walking at your speedy pace, you have made me a much faster walker, even when you’re not guiding me. You understand my busy lifestyle and help me navigate crowds like a ninja. Sometimes, my sighted friends even let you just lead the way because you’re just that brilliant at what you do.

I continue to lose my vision. Just when I think I’ve lost a lot and it will stabilize, BAM.. I lose more vision. You, smart girl, are able to adapt to my vision loss more than the closet humans in my life can. You learn what Mama can’t see anymore or what she’s likely to miss, that she may have been just fine with 6 months ago. Not all guide dogs can adapt that well.

They say dogs are a man’s best friend, but you, sweet Makiko, are much more than that. When I’m having a particularly rough day or struggling with depressive symptoms, you are right there to stick your head in my lap and ask for permission to come cuddle, or lay right beside me. You make me keep going as I will never let your exercise, food, water, and relieving needs go unmet.

As we embark upon year five, sweet girl, I promise to show you daily how much I love you and am grateful for you as we have the time of our lives on this journey called “life.” Thank you for giving me my life back, after vision loss. I wouldn’t be where I am today without you.

Love,

Jessica

Night Travel


I have lost most of my sight. However, during the day I am able to use what little residual vision I have left. At night or in dim environments, my nightblindness kicks in and I am totally blind. That can be a little intimidating. 

When I was a cane user, I felt at risk at night, not safe, and I felt more of a target. Whether that is true or not, I’m not sure but that’s how I felt. I didn’t like to travel independently at night if I didn’t have to and I was always a little on edge. 

This pictures below mean a lot to me:

Makiko, a black Labrador guide dog, is laying down briefly. She is wearing her harness but it is hard to see with no flash and the outside environment is almost pitch black.
No Flash: Makiko is laying down momentarily while we wait for our ride. It is hard to see her because it is almost pitch black outside.
This picture is with flash. You can almost pretty much just see Makiko's harness, especially with the reflective strips, and you can see a little bit of Makiko but since she is black it is hard to see her. Outside is almost completely pitch black.
Flash: Makiko is laying down. You can see her a little better with the flash, especially the reflective strips on her harness, but you can also see how dark it is outside.

Why do they mean a lot to me? Because with her, I love getting out at night. I love traveling independently. Sure I still have a little anxiety now and again, but I am happy. I am confident. I am free. 
Last night I caught a LYFT to go out with friends. I waited outside for the driver, then he drove me to my destination, and I independently got out of the car and made my way walking to where we were going. 

As I said before, I am not able to use any residual vision at night so it’s ALL her. And she takes her responsibility very seriously and guide’s me safely. 

She is my rock star. 

Responses to #HowEyeSeeIt Feedback


Hi All,

Most of you probably read my email to FFB and my discussion on why this issue hurts me so deeply.  I sent that letter to FFB via email and I received a response, to which I replied. I will continue to reply as long as they do and sincerely hope that they continue this discussion. I will update this blog as I receive replies so as to not spam everyone with many different posts. The top email will be the most recent email with the very bottom email on this post being the first email that FFB replied to me.

———- Forwarded message ———-
From: Jessica Naert <jessica.n.naert@gmail.com>
Date: Tue, Sep 27, 2016 at 6:20 PM
Subject: Re: FW: #HowEyeSeeIt Campaign
To: Rhea Farberman <RFarberman@blindness.org>

Hi Rhea,

Thank you for your response. I wholeheartedly appreciate you replying to my concerns and continuing this conversation.

In school growing up, I was always taught that it doesn’t necessarily matter if you didn’t intend to hurt somebody, it mattered that you DID hurt that person. We were taught to apologize and reconsider our words/actions for the future. I would like to encourage FFB to do the same. While you may have intended to showcase the strengths and talents of blind people, this campaign is not doing so.

There are many other ways to showcase the resilience and mastery of people who are affected by retinal disease. For example, have you had the opportunity to look at Facebook recently. Many blind people are posting #HowEyeSeeIt videos in response to the horrific videos posted by FFB and they ARE showing how they can do the same things. Having sighted people attempt to do daily tasks without skills training and experience is not showcasing anything about people who are affected by retinal diseases. While I don’t exactly think this is the best solution because blind people shouldn’t have to show that they can do things equally to their sighted peers, that would be a far better approach, in my opinion, than your current campaign. Better yet, actually having your supporters TALK to a blind person.. learn FROM them.. that is the best way to, as you stated, get a “new appreciation for what it is like to master a skill without vision.”

That is my opinion. I am one blind person. However, you have also heard from many many blind people, many blind organizations, about how harmful this campaign is. But you’re not listening to any of us. Yes, there are a few blind people that do agree with the campaign and that is absolutely their right. I urge you, however, to think about the masses that you are hurting. The mass amount of people that you are portraying as incapable… the mass amount of people who have been literally sick over this campaign. Such a large community has been truly stressed out over this campaign.. We have been mocked, inaccurately portrayed, and have seen a huge response of fear and pity… all this due to a campaign by organization that purportedly is supposed to work to help people who are blinded/affected by retinal conditions, such as ourselves.

My job is a Transition Vocational Rehabilitation Counselor and as such I work to assist individuals with disabilities who are in high school to obtain and maintain gainful employment. Therefore, I have a very strong connection, both personally and professionally, to anything that discusses or affects employment for people with disabilities. The unemployment rate for persons with visual impairments is disgustingly high. The people that your videos are reaching are CEOs, supervisors, hiring managers, etc., that will remember these videos when the next blind person walks through their door and while you may not think that it is doing damage, it is. Please stop being defensive and listen to the people who are experiencing it. Another fact for you – did you know that blindness is one of the biggest fears people have? I remember losing my vision – sure I was somewhat scared and trying to figure out how things are going to pan out. As I continue to lose my vision, I still do wonder this from time to time. However, I have had excellent skills training, adjustment to blindness assistance, orientation and mobility training, assistive technology provided to me, etc., and I am equipped to handle these changes. People who are blindfolded for 5-10 minutes are not equipped and displaying that as a fundraising tactic is gross negligence to the population you serve. You have the power as a large organization to partner WITH us, not AGAINST us, and make a huge positive impact on the world at large but instead you are doing a huge disservice.. I’m not really sure how else to describe this.

Today you shared a Facebook post by ONE blind person. His voice should be heard, as should all of ours. Instead of highlighting several different views that have been shared about this campaign, both positive and negative, you chose this one, as if you were saying “Haha.. I TOLD YOU SO.” This is childish and not truly encouraging discussion. You obviously are aware of a few blind people that support this campaign but I promise you there are thousands more that are very hurt by it.

It’s okay to make mistakes… it’s more than okay for FFB to say “oops, we didn’t realize the effects this might have,” and switch gears. Please consider doing this. And, please consider having a variety of blind people on your Communications and Marketing team. I firmly believe that FFB and the blind community can forge amazing partnerships to continue to fundraise in big ways to advance the research for prevention, treatment, and cures for retinal degeneration diseases. However, that is not going to happen as long as you have this campaign going. We are too hurt. Again, I encourage you to go on Facebook and search #HowEyeSeeIt. You will see many videos and read many blog posts and posts in general from individuals who are blind or part of the blind community through relation who are deeply hurt by this.

Again, thank you for your response. I look forward to your next one to continue this discussion. It is my hope that we can reach a resolution that isn’t going to damage blind people for the next century or more. Curing retinal diseases is great but so far, my disease can’t be cured.. I still live with it.. but that’s not the problem. The problem is society’s perception about my abilities, about people with my disease, about people with visual impairments. THAT is the problem… and now YOU are part of that problem.

Thank you,

Jessica Naert

Diagnosed with Retinitis Pigmentosa at the age of 14

PROUD person with a visual impairment

On Tue, Sep 27, 2016 at 12:01 PM, Rhea Farberman <RFarberman@blindness.org> wrote:

Jessica – Thank you for your email and for your past support of FFB.

 

The #HowEyeSeeIt campaign is intended to showcase the strengths and talents of blind people by pairing them with sighted counterparts with similar careers for a short interaction including acting, dancing, cooking and football.  We think these interactions give the sighted person a new appreciation for what it is like to master a skill without vision.  You and others have objected to the list of possible blindfold challenge activities.  We of course didn’t mean for the list to cause any offense and took it down when objections about it were raised.

 

Our goal is to raise awareness of retinal disease by celebrating the resilience and mastery of people who are affected and to raise funds to support the Foundation Fighting Blindness’ mission to advance the research to prevent, treat and cure blindness caused by retinal degenerative diseases.

 

We believe the HowEyeSeeIt campaign portrays the strengths of blind people, not helplessness.  Where we do agree is on the need to continue to raise funds for research.

 

Finally, all comments to the campaign Facebook page are welcome and allowed.  The only time we ever block a person from further comment is if they use inappropriate language or repeatedly spam a post.

 

Respectfully,

Rhea Farberman

 

Rhea K. Farberman, APR

Senior Director, Communications & Marketing

7168 Columbia Gateway Drive, Suite 100

Columbia, Maryland  21046

(410) 423-0635

https://HowEyeSeeIt.org/

 

 

 

 

 

 

 

From: Jessica N. Naert [mailto:jessica.n.naert@gmail.com]
Sent: Saturday, September 24, 2016 9:30 PM
To: Info
Subject: #HowEyeSeeIt Campaign

 

Dear Foundation Fighting Blindness,

Hello! My name is Jessica Naert. I have been a supporter of yours for several years, especially with the VisionWalk. I have co-captained several teams over the years, including “The Way Eye See The World” and “The Eye Catchers,” along with my best friend, Misty Allen. Both Misty and I have Retinitis Pigmentosa (RP). Misty is now totally blind. I have a little vision remaining. Retinitis Pigmentosa is one of the leading causes of inherited retinal degeneration vision loss and one that your organization readily researches to find a cure and fundraises to continue this important research. I support this type of research and applaud you for the work you have done. However, after your #HowEyeSeeIt campaign, I am not so sure that I can continue to support YOUR work. There are many ways to touch people’s heartstrings and encourage them to donate. Instilling fear of blindness into your donors or potential donors should not be one of them.

Your campaign is very misguided, encouraging supporters to fundraise by showing how difficult certain tasks are under blindfold. It is conveying that blindness is something to be feared, that blind people should have low expectations for themselves, and that society should also hold low expectations for blind people. Many are aware of the Muscular Dystrophy telethon, which aired every Labor Day. It was discontinued several years ago and one of the reasons it was is because people who actually HAD Muscular Dystrophy, along with their families and friends, were tired of the telethon portraying them as helpless victims, implying that without a cure individuals with MD have nothing to contribute. That is EXACTLY what you all are doing, FFB. This campaign has many similarities to the ice bucket challenge to raise funds for ALS. However, that challenge did not have their supporters pretend to have ALS for the day and the overall premise did not instill fear about the disease. You all could have done many different other creative things to follow the influencer to social followers model. Why this? If it was because you didn’t realize the dangerous impacts it would have, many of us can understand that and forgive. But instead of accepting this might be a problem, you continue to silence us.

I’m very disheartened by your censorship and lack of willingness to discuss this concern. Many blind individuals and sighted individuals alike have posted on your Facebook page expressing their disappointment and disapproval of this campaign. Some of these posts were very neutral, including Nicole Schultz-Kass‘. She is no longer able to post to the page. I too posted a very neutral post explaining my longtime support of your organization and while I wasn’t blocked from posting, my post was deleted and other comments were deleted. Many many other blind people have posted that they were blocked as well. You then proceeded to post and say that you weren’t doing this when we could easily show that you did. By doing all of this, you are fighting the blind PEOPLE, not the diseases. It would have been more helpful to the situation and cause if you all could have responding acknowledging our viewpoints and changing this campaign some so that you worked WITH the blind people, not against them.

I am not a member of the National Federation of the Blind (NFB) but understand that they have reached out to you about this. They are a leading organization in the United States for people and of people with vision loss. While you don’t necessarily have to agree with their viewpoints all the time, when an important issue like this arises, why not welcome the opportunity to continue to build the bridge between another leading organization for blindness in the United States (like yourself) and have an open dialogue?

As previously mentioned, Retinitis Pigmentosa is the cause of my blindness, but the fear our society has about blindness and the misconceptions surrounding blindness is the cause of most of the issues I have today. The perception that blind people need to be taken care of, that they would be a financial, physical, and/or emotional burden to hire and work with, that they are incapable of safely and effectively parenting, that they cannot be independent and contributing members to their families, communities, and a society as a whole… THIS is what hurts us. Several of the videos on your campaign webpage show professionals (film makers, chefs, football players, DJs, etc) who put on the #HowEyeSeeIt blindfold and try and do it without sight, many times with the guidance of somebody who is actually blind. This tactic is not appropriate because the blind chef, Christine Ha, has had YEARS of experience and skills training to get to that point, as did Jake Olson with football and Joe Mons as a filmmaker. The campaign has also encouraged more simple tasks be completed under blindfold, such as counting cash. Of course somebody who has not had to every do this before isn’t going to know how to do it but somebody who has been blind and had to learn how to adapt might pull out their iPhone and pull up the LookTel app which will tell them what each bill is, or pull out their money reader from the US Treasury, or feel the particular way a bill is folded to know which denomination it is. One of the most spread videos is about how blind people have trouble taking care of their children. This is so deeply painful for me. I am not a parent but plan to be in a few years. I have many many friends who are blind parents and have done a fantastic job at raising such sweet, responsible, loving, intelligent, fabulous children. One of my friends once was told that she shouldn’t fight in court for child custody because the judge will just look at her blindness and assume that she’s inept. THAT is absolutely disgusting and EXACTLY what your campaign is encouraging and encouraging our society to believe.

Through this campaign, you are suggesting that the only “hope” those who have been blinded by retinal degenerative diseases have is to wait for a cure. This is NOT the case. Depending on your geographic area, there are so many wonderful resources and support services out there to help these individuals be independent, obtain and maintain competitive integrated employment, have families, etc. I was diagnosed with RP at 14. I am now 27. I am a full-time state employee (Transition Vocational Rehabilitation Counselor), helping high school students with disabilities plan for their transition out of high school and into living productive lives. I am a devoted daughter to my beautiful mother, and a sister to my amazing sister in medical school. I am a leader in many organizations. I am a disability advocate. I am a best friend to many beautiful people, a girlfriend to a fabulous guy. I am a volunteer. I am ALSO blind. Blindness is a huge part of me, partially because I choose to let it be, but it does NOT define me.

There has been a lot of research done on these types of simulations. A blindfold simulation by a blind person will never be accurate. Arielle Silverman conducted blindness simulations as part of her research her in Ph.D. program at the University of Colorado. Several individuals were blindfolded, while several were not. The individuals that were blindfolded left the activity left with the perception that blind individuals are less able to hold down basic professional jobs and were less able to live independently. This simulation did absolutely no good for those with visual impairments. As Arielle has said, “Blind folding yourself is not much like living with blindness. When people develop permanent blindness, they get used to it. Research shows that most people who develop disabilities eventually adjust. The fear, frustration and distress go away over time.  It is just part of the human condition to adapt to any new circumstance. Further, when people become blind, they learn techniques and adopt tools, such as the white cane, that give them independence.” This type of simulation does not help them realize this. I will say that there are a FEW occasions, I believe, that disability simulations may be okay but there is a lot of thought and planning that goes into them to make them appropriate and not harmful.

In addition to your #HowEyeSeeIt hashtag, you can also add #ableist, #damaging, #dangerous, #misguidedfear, #oppression, #counterproductive, #mockery, and several more. I would love to talk to you about how we can remove those extra hashtags in reality and add more positive ones. While this campaign will end (hopefully sooner rather than later) and the sensation will die down, people with vision loss and their family and friends will have to live with the harmful effects of this campaign for a very long time. Do you employ anybody on your PR/Marketing team that is actually blind and actively part of the blind community? If not, I encourage you to do so. Maybe then you can find ways to fundraise for medical advances while not compromising the dignity and well-being of the population you apparently work for.

We, thousands of blind people from across the United States, look forward to hearing from you soon to have an open discussion about this issue. Until then, we will use #HowEyeSeeIt to speak AGAINST this campaign and post positive, empowering, and ACCURATE everyday depictions of blindness, showing our independence, success (at home, at work, as active citizens in our communities), and hope that we can help shine a light for you and your supporters on what blindness really looks like and how teaming up with us, not against us, will further your campaign and fundraising efforts drastically.

Thank you,

Jessica Naert

 

Sincerely,

Jessica N. Naert

 

“The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart.” -Helen Keller

Sincerely,

Jessica N. Naert

 

“The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart.” -Helen Keller

#HowEyeSeeIt


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Picture Description: Medium blue background with white text centered – #HowEyeSeeIt. Above the “y” in “Eye” is a picture of an eye.

Warning, folks – this post is going to be long. However, I really hope you will read to the end to understand this very important issue that means so much to me and thousands of blind people across the United States. There are many links throughout this post. For those who are sighted, you can click anything that is underlined and a different color and it will show you what I’m referring to in that sentence/paragraph.

Many of you have read my Open Letter to Foundation Fighting Blindness sharing my strong opinions and concerns regarding the #HowEyeSeeIt campaign, urging them to modify their campaign to be less damaging to blind people and include blind people in creating their campaigns. This would be much more inclusive and supportive of the blind community but would also strengthen their fundraising efforts as they would have an ally in the blind community, instead of enemies. If you haven’t read the letter, I encourage you to do so before you continue reading as this might make more sense

I feel very strongly about this issue. In my letter to FFB, I wanted to be direct and share my concerns with some emotion but not too much. (We all know that would go on forever if I did so.) However, I wanted to share more of my concerns and emotions with you here.

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Picture Description: Dark blue blindfold with the text – #HowEyeSeeIt

The #HowEyeSeeIt campaign encourages supporters to make a donation to FFB and create a video of themselves blindfolded doing simple daily activities. The video is hash tagged with #HowEyeSeeIt and is shared across Facebook to encourage others to donate and make videos to continue spreading the word. It is a influencer to social followers model campaign. The #HowEyeSeeIt website has campaign materials, including a printable blindfold/mask with the words #HowEyeSeeIt on them, branding, and social media graphics. They also have “example” videos and “featured videos.” They make it pretty easy for someone to participate and spread the word, which is great. However, the message that they are conveying through encouraging these videos and simulations is deeply damaging.

To be very clear, I fully support Foundation Fighting Blindness’ research efforts. I fully support them launching a digital initiative to increase public awareness about retinal degenerative diseases and the important work of the Foundation Fighting Blindness. I DO NOT support marginalizing the population they work (blind people) by employing a campaign that encourages its supporters and viewers to pity blind people and fear blindness.

Many people have become quite upset about this campaign and have written FFB privately and/or posted on their Facebook page. These are blind people and sighted alike. Many of their posts have been deleted, blocked from commenting, and/or blocked from viewing their page altogether. This shows that they are not open for discussion and are just wanting to silence us. I get that they don’t want all the negative publicity but they could encourage those with concerns about the campaign to contact them via another method to at least hear the voices of the group they work with. But they didn’t.

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National Federation of the Blind (NFB) has also spoken very publicly about their concerns regarding this campaign. FFB hasn’t listened or even been receptive to dialogue. Therefore, they are encouraging their Federationists to post a positive video of themselves as blind people doing important or everyday tasks and showing how they are very capable. While I am not a Federationist/a member of NFB, I do intend to do this as yet another way of spreading awareness about the harmful effects of this campaign and how we, as blind people, live amazing fulfilling lives.

Research shows that disability simulations aren’t very effective and actually can do more damage than good. Several years ago, I would have been all over this kind of simulation. However, since going through grad school and working in the disability field and being so immersed in the disability community both professionally and personally, I am not a fan of them anymore. I will say that there are can some simulations that are pretty good if done professionally. For example, the Division for Blind Services came and did a sensitivity training with my office at work since we are going to start working with more blind people as consumers, but also because they work with a blind person (that’s me!). Many of my co-workers found this pretty useful in understanding basic things, such as why moving things in the refrigerator, especially my food, causes me so many problems or why taking a pair of scissors from my office and putting them back in a different place can be so frustrating. However, I wouldn’t encourage them to try and navigate out of their house to a vehicle, put on make-up, play a sport, try and count the appropriate money and pay at a store, etc., because that will just lead to frustration, and then pity, and then fear.

One of the videos specifically instills fear about parenting while blind. This is gut-wrenching to me. One of my very good friends is blind, got divorced, and was going to go through a child custody legal proceeding but was given advice not to, because the Judge in our area for this type of legal proceeding would likely consider her incapable of safely taking care of her children due to her blindness and her blindness alone. So she didn’t do it and has worked it out other ways. But how sad is that?! I have so many different friends now that are blind parents and do a fantastic job. Their kids are absolutely amazing and in many cases I think are better citizens because of different situations they have experienced and faced due to having a blind parent. I am going to (hopefully) be a parent in a few years and sure, there are a few things that I have wondered about how I am going to do with my vision loss.. but it’s do-able and we don’t need all these people, especially law enforcement, legal personnel, and social services agencies thinking that we are inept solely based on our blindness.

I was already a bit upset and thinking about speaking out about this campaign a few days ago and then when I saw the Today Show segment, I literally became sick to my stomach. Rebecca Alexander has Usher Syndrome, which is a combination of hearing loss and vision loss. The vision loss is caused by Retinitis Pigmentosa, the same condition I had. Her brother is an NBC Correspondent and went on the TV show with her to talk about the #HowEyeSeeIt campaign. Together Rebecca and Peter went to a nice restaurant and attempted to eat a meal. Peter experienced difficulty with drinking out of the glass which had a piece of fruit on top, cutting his meal, figuring out where his food was, etc.. all things that do happen to the visually impaired. However, I will say that we also have methods to help us with this, such as when we place food on our plate we will remember where we put it or when we first get the food if it was served by somebody else, we will ask for a description of where it is on the plate. (I was pretty impressed with the waitress who said that she was bringing something in on his right – that announcement was pretty awesome and most wait staff don’t do that sort of thing, unfortunately). Rebecca is an amazing, beautiful woman who has accomplished a lot, from climbing some of the highest mountains, to some pretty impressive swim times, etc. So for her to say that she has become comfortable with other people cutting her food just completely rubbed me the wrong way. If you can climb a mountain, you can cut your own food. She also said something about wanting to experience everything while she can. I have mixed feelings on this. The way she said it sounded like she had a death sentence.. blindness isn’t deadly. Now if she had said she wants to VISUALLY experience things while she can, I would totally understand that. I have a few “vision bucket list” items of my own. It’s just really sad that two individuals who are very much in the spotlight already went on the Today Show, which has a wide following, promoting these ideas and this campaign. Ugh.

These simulations may somewhat portray what it is like for those who lose their blindness overnight (which can happen) or have sudden vision loss, but for those of us who have been living with vision loss for awhile, it is not accurate. We still can get pretty frustrated, don’t get me wrong, but we develop skills and techniques over time with practice to be able to do the same things we did prior to our vision loss or those with congenital blindness, those that their sighted peers do. For example, putting on make-up can be quite the challenge. Joy Ross has some pretty excellent videos about how she has learned to put on make-up as well as other daily tasks. People who play sports and are visually impaired have had a lot of training and practice to be able to perform at the level they do.

Assistive technology of course helps greatly.. we can go to a restaurant independently (of course after we have figured out transportation), and read the menu with the help of an app on our phone. We can determine what cash we have in our wallet with an app on our phone, the US Treasury money reader, or by folding our cash certain ways for each denomination (very l0w tech yet easy way). We read our mail with the use of a CCTV (closed caption television to enlarge font and change colors/contrast if needed) or with a PEARL camera and OpenBook software which converts printed documents to text and then reads it aloud. We can cook with different adaptive techniques and equipment.

I live alone. I do everything completely independently. The only thing I really need assistance from others for is transportation, but if a friend isn’t around, I can just call an Uber or Lyft. I work a full-time professional job and absolutely love it. I hang out with friends all the time and have a very active social life. I volunteer in the community. I lead several different groups and organizations. I am a huge family person. While blindness does suck sometimes and get frustrating, I don’t need anybody’s pity because of it. I don’t need others fearing blindness because that just only leads to more unemployment of people with visual impairments (it’s already incredibly, disgustingly high), leads more people to think that blind individuals can’t parent, and becomes the reason that blind people have trouble… not the blindness itself. I also don’t need people thinking I’m inspirational because of what I do as a blind person. I am just taking the deck of hands I was dealt and playing the game of life. When people have called me inspirational in the past, I have gently told them this and added that I’m okay with if they think my perspective and positivity is inspirational, but don’t want them thinking me just living is inspirational.

Don’t encourage this ableist campaign. Please don’t donate to the #HowEyeSeeIt initiative. If you make a video, pair up with a blind person and create an uplifting, positive video about how they are living their daily lives. Don’t post a video that shows how frustrating it is to be blind.

Thank you.