60 Feet 6


60 Feet 6- That’s an interesting name, isn’t it? 

The 60 Feet 6 Foundation is an amazing foundation established by Major League pitcher, Derek Holland. (He formerly played for the Texas Rangers).  The foundation originally raised funds to fight pediatric cancer but has now partnered with Guide Dogs for the Blind. The Lone Star Guide Dog Raisers (LSGDR) Dallas Club has a puppy in training, Dutch, raised by Henry Roberts (and family). “The Dutch Oven” is Derek’s nickname and he sponsored this puppy and therefore it was named after him. 

Every year, this Foundation hosts a celebrity golf tournament. Henry, Dutch, and other Guide Dogs for The Blind puppies in training talked to all of the golfers as they made their way through the course and shared the tremendous impact that these dogs have on people’s lives who have visual impairments and why fundraising is so important. 

 I had the honor of being asked to speak at the tournament. I was given a very short time frame and I wanted to really try and share the impact a guide dog has made on my life. I got a little nervous at one point, but I was overall pretty happy with it. I also had the pleasure of getting to know Derek Holland. He is such a wonderful guy with a huge heart. 
(There were some other famous people there too including Ranger closer Sam Dyson, former Ranger Michael Young and former NBA dunk champion Spud Webb) 

Here is the speech.. the person recording cut off the first part of my introduction but here is the bulk of the speech. 


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Jessica, Makiko, and Derek Holland at the 60 Feet 6 Foundation celebrity golf tournament reception

The Joys of Traveling with Makiko


Makiko and I have been busy lately!

In August, we went to Florida for work – a Project SEARCH conference.

In September, we moved Mom to Colorado.

In November, we went to visit Mom for Thanksgiving in Colorado.

In December, we went to Houston for a work conference and are now in Colorado visiting Mom and family for the holidays!

Traveling can be tough for anyone, but especially if you have a disability. I have always loved traveling. It was a lot more frustrating though when I was a cane user, especially when flying alone, because I had to depend on one of the airlines’ escorts to help me to and from my gate. Most of them are incredibly slow to get there, aren’t in any rush, and usually are only trained to help people in wheelchairs, not those of us who don’t need a wheelchair. When I first got Makiko, I still waited for one of these escorts but now, we just wing it! Together we know the way through the DFW airport, Dallas Love Field Airport, and Denver airport and don’t need any sort of assistance. In airports we aren’t familiar with, I usually just ask for directions at the check in counter or from somebody when we get off the plane and then we go. It’s so much more freeing and remarkably less frustrating.

It’s always gives me a chuckle to see how TSA reacts to us. Almost always we have to tell them how we do it. (Makes me so glad for the practice we had at a real airport with real TSA agents during guide dog training) A few weeks ago, they kept trying to wave me through and then became frustrated when I didn’t notice. I finally was able to sense something and got it sorted out. This time they had four TSA agents gathered in a circle on the other side of the metal detector whispering. I noticed a TSA agent go right in front of me and asked him if I could assist.. he said they were trying to figure out if the alarm would go off. I said it would with her and once again explained how I put her in a sit stay, extend the leash, walk through, call her through, they pat her down, swan my hands, and then we are on the way. I wrote them and encouraged them to do a little more training and even offered to provide it.. for free! I haven’t heard back yet though. 🙂 

Makiko also loves traveling. Here is a video I took shortly after we got off the plane a few weeks ago. You can see her take me all the way to the elevator to take down to baggage claim. 

What makes traveling easier for you?!

Follow-up visit


Selfie style pic of Makiko (black Labrador) laying on Jessica (Caucasian woman) who is wearing a black tshirt with white writing. Makiko is cuddled against Jessica's chest resting, with her eyes closing as she rests. One of her purple toys is sitting on the couch beneath her.
Black Labrador guide dog is centered in the frame on Jessica's chest. Her eyes are closing as she rests with her purple toy near her paw.
Makiko and I had a great day! Michelle, an instructor and Field Rep, from Guide Dogs for The Blind came out as she was making the rounds doing evaluations on all the teams. Makiko and I did great! Michelle gave us a few tips on different tricky situations. I was so proud of Makiko and she was so proud of herself. We played and cuddled so much after. She is now happily laying on me and it melts my heart so. This precious girl keeps my heart and body going each and every day. Love her! 

I knew Makiko and I were doing excellent but it still makes me a little nervous when they come out. It’s always great to hear how our working relationship is still top notch!

Guide Dogs for The Blind is one of the only schools that has this amazing follow-up program. Most schools do not do yearly follow ups and emergent visits when teams have problems. It makes me so grateful I chose Guide Dogs for The Blind and Guide Dogs for The Blind chose me!

Shopping Blind


I’m not a shopper, by any means.. so when I do go shopping, I appreciate a good experience.

Today, I went shopping at Victoria Secret for the basics and left feeling so appreciative of their wonderful staff and the excellent customer service they provided. Steven and I were stopping by the Apple store and a few others stores today too so he was with me. We went in together and started to figure out where I needed to look when a very sweet customer service representative named Lauren came over. She asked me if she could help and I acknowledged that I would very much appreciate some help. We were looking at bras and underwear. I knew what bra size I was but no idea about underwear.. so she asked me what jeans size I wore.. no idea once again. Did I mention I don’t really go shopping? 🙂

So I told her what I liked and she took me to show me a few different kinds. She let me touch each one so that I could see it with my limited vision but also get what I couldn’t see with my limited vision with my hands. I so loved her accessible approach to helping me shop! I asked her about the prices, she told me a special about bras and underwear combined, so then we went on to bras but hadn’t quite picked out what I wanted for underwear. I told her what I was looking for and we agreed to have me try a few things on. At this point, I told Steven he could go wait outside because my sweet, shy boyfriend gets very awkward just waiting in the VS store.

I went back to the dressing room and tried on a few bras but then the fitting specialist decided that a different kind of bra might be a better fit, with the clasp at the front. So she lets me try it on and then a few minutes later she comes back, and I still hadn’t gotten it on. (Note: I had never had a front clasping bra before). I reminded her that I was visually impaired and was having a hard time figuring it out. She apologized profusely and then asked me what the best way to show me it was. She showed me how to clasp and then unclasp and then left me to try it on. What’s important to me is not that she knew how to help me right away, but was that she genuinely cared, wanted to learn, and asked me how to best assist instead of just guessing or assuming. That speaks wonders.

I left with exactly what I wanted, a great experience, and while I still needed a little help, I felt pretty independent because I could go into the store, get what I needed with the assistance of their staff, and then leave.

(Disclaimer: To me it’s a little weird writing this knowing my family reads this but hey, every girl needs bras and underwear, right? This kind of thing isn’t talked about enough either in the disability community.)

October – BIG month for People with Disabilities


As I have held the harness handle each morning as Makiko guides me into work, whether that be at one of the high schools I serve, the University of North Texas, or at my office building, I have been reminded of the importance of this month, October, for people with disabilities, especially those who are blind or visually impaired.

October is…

  • National Disability Employment Awareness Month
  • World Blindness Awareness Month
  • Eye Care Awareness Month & Children’s Vision Month
  • the month of National Braille Week (October 10th – 16th)
  • the month of White Cane Safety Day (October 15th)
  • the month of World Sight Day (October 13th)

Each of these are huge by themselves but together make a pretty big month.

National Disability Employment Awareness Month was declared in 1988 by the US Congress to raise awareness of the employment needs and contributions of individuals with disabilities.

This is HUGE to me both professionally and personally.


As a person with a disability in the workforce, I am blessed to have a very rewarding job that I absolutely love to go to, where as a person with a disability I am treated as an an equal and I have the accommodations and supports to work as one. I have an amazing supervisor who has been there for me as I continue to lose vision, is not afraid to learn or ask questions about accommodating someone with vision loss, and is just very generally supportive. I recognize though that not everybody has this opportunity to be equally employed or have an accommodating supervisor.. but that’s what this month is about.. helping highlight the importance of hiring someone with a disability and the contributions that they CAN have to the workplace. 

Professionally as many of you all aware are, I am a Transition Vocational Rehabilitation Counselor for the State of Texas – now the Texas Workforce Solutions – Vocational Rehabilitation Services, formerly known as DARS. My passion/job is helping high school students and young adults with disabilities figure out their next steps after high school and how they can transition into employment. With that, I absolutely love when employers see these individuals who at first they didn’t think would be good employees or didn’t understand how they would be able to employ them, and then years later they see what amazing, devoted, hard-working, long-term employees they are and how they are an asset to the business in many ways.

It has been shown that when an individual with a disability is given the accommodations they need and are in an accessible environment, they often stay longer than their counterparts without disabilities. So, spending a little extra for a piece of Assistive Technology will pay off in the long-run when that person stays for years and years whereas they are spending a lot of money in on boarding and training of new employees who don’t stay. A lot of this is because individuals with disabilities have a hard time finding employment so when they find a good job, they often try harder to maintain it and make up for areas that they have difficulty in or aren’t able to do due to their disability. People with disabilities are often very LOYAL to their employer. People with disabilities often have to be creative in their personal and professional lives to “get the job done” and therefore are often more flexible and think with an open and creative mind. This is often a great asset on the job!

Of course, the Americans with Disabilities Act (ADA) has helped us TREMENDOUSLY in making sure that individuals with disabilities are given reasonable accommodations and to prevent discrimination as much as possible for employing individuals with disabilities. 

(Random fact: Did you know that public access for people with service animals and employing someone with a service animal are covered under different sections of the ADA? Public access rights are covered under Title III but reasonable accommodations are covered under Title I. What this means is an employee, in most situations, has to apply for a reasonable accommodation to bring their guide dog or service dog with them to work and in most situations, it has to be approved unless it provides to be an undue hardship on the business.) 

Now, I am charging YOU, yes you.. the person reading this.. next time you are looking at your candidate pool or interviewing someone, next time you are sitting on an interview panel, or giving input on hiring practices, please consider all of this.. please help make your workplace more inclusive as a whole and don’t discount someone’s abilities just because they have a disability.

World Blindness Awareness Month was created to help the world understand the realities of living with vision loss, encouraging people to become more aware of individuals with visual impairments and how they are vital members of society.

Eye Care Awareness Month and Children’s Vision Month are both in October to encourage individuals to get routine eye exams and take care of their eye health. One place I read stated that 80% of blindness is avoidable through prevention or treatment. (I’m not sure I believe that though.) Children’s Vision Month is to encourage parents specifically to take their children to eye doctors appointments and they can get their vision examined starting as an infant. Often times vision problems are the cause for difficulties at school but parents/teachers don’t realize it until after struggles.

National Braille Week was October 10th – 16th and aimed to raise awareness of Braille and other non-visual systems that open up written text and literacy to visually impaired individuals.

Personally, I am not a Braille reader but I have started learning it here and there. I think if I had lost my sight earlier on, I would have been more dedicated to it for literacy purposes, but right now, I use other methods of accessing written text that work very well for me. I switch off between using large print (when my eyes are fresh and I’m not tired) and audio. At work, when I’m not face to face with a consumer, I’m usually accessing and writing text and so I use my screen reader a lot for that, in addition to my CCTV and scanning documents into my computer using the PEARL camera and OpenBook or a regular scanner.


However, Braille is an amazing system and is absolutely essential to the literacy of our youth who can’t access written text visually. 

White Cane Safety Day was first signed and proclaimed by Lyndon B. Johnson on October 15, 1984. It is a day to celebrate the achievements of people with blindness or vision loss and also to raise awareness of the white cane as a symbol of independence for people with vision loss. In recent years, many White Cane Safety Day celebrations also include recognition of guide dogs as well.

I LOVE White Cane Safety Day (also known as White Cane Day – WCD) every year. In the past, I have organized it for my community with two staff members of UNT. This year, we decided to join forces with Fort Worth and participated in their White Cane Day — and loved it!! It was at the Fort Worth Stockyards. There was a Scavenger Hunt where we learned different facts about things that affected individuals with visual impairments, such as the development of the first guide dog school in the US, The Seeing Eye. We saw the Cattle Run, which was totally cool. There were a lot of guide dog handlers there so that is always fun to see new faces and catch up with old friends. We had a terrific lunch and had the opportunity to listen to inspirational stories of people with visual impairments and how they have overcome their blindness .

Makiko is seated in harness in front of the Fort Worth Stockyards Visitor Center. Cattle of many different colors moving forward in the Cattle RunSeveral people in red shirts posing - one lady with a yellow lab, one lady with a black lab, two other ladies standing, one male standing, and one male in a wheelchair

World Sight Day is on the second Thursday of every October and is designed to bring awareness to eye conditions that are avoidable.

World Sight Day has 3 goals:

  1. To raise public awareness about blindness and vision impairment
  2. To influence governments to support blindness prevention
  3. To educate people about avoidable blindness

The International Agency for the Prevention of Blindness (IAPB), under the direction of the UN’s World Health Organization (WHO), and the Lion’s Club International work together to coordinate activities and events the world over to celebrate World Sight Day.

So, all this to say.. please be open minded when thinking about employing or working with an individual with a disability and realize they have many strengths and abilities. There is a great website, JAN – Job Accommodation Network, that does an excellent job at describing how to accommodate people with different disabilities. I encourage you to check it out. If you’re still not sure, feel free to ask me or another trusted individual with a disability.. most of us would be glad to share our stories and knowledge with you. You can also contact your state’s vocational rehabilitation program if you would like to know more or are interested in hiring people with disabilities. I also encourage you to get routine eye exams and encourage your loved ones to too. Individuals with disabilities choose many different tools (for example – for individuals with visual impairments, some use Braille, some prefer audio.. some use a cane, some use a guide dog) to be independent in their personal and professional lives and it is their choice what they want to use.

Oh.. and one more thing.. Happy Halloween! 🙂

Makiko, black lab, seated in harness in front of a squirrel and turtle cardboard cut out, with pumpkins. Her tongue is sticking out due to the heat. Jessica and Steven (white female and male) doing a selfie with pumpkins in the background. Makiko, a black Labrador, is positioned in front of a lot of pumpkins in a field. She is in harness and looking off into the distance to the right.Makiko is looking up at the camera in a pumpkin outfit that fits much like a cape.
 

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.

 

An Open Letter to Foundation Fighting Blindness (FFB)


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

(A follow-up post will be live later this weekend which will further discuss my opinions and reactions to this and explain more. Stay tuned!)

Beauty in Blindness


I am Blind. I am BeautifulBlindness is beautiful.

I love my life as a blind individual. Growing from a person with full sight, to a person with low vision, to a person who is legally blind with very little vision remaining, I have learned a lot and believe I have a special outlook on life. With a lot of the scientific research that has been happening, I get asked increasingly more often.. “If you could, would you become sighted again?” Honestly, right now my answer is no. I love the life I live right now. Blindness doesn’t define me but it has most definitely shaped me. Here are some of the many reasons I love being blind or that being blind has taught me:

  • Personality vs. Appearance – I get to know somebody first based on their personality. I can still see a little but what they look like but their personality weighs much heavier than their physical appearance. I realize that some sighted people are like this too but I just think it’s much easier for me to see someone for who they are on the inside than who they are on the out with limited vision.
  • Airports – In most airports, we get to skip the long lines at TSA and go right to the front.
  • Performances – I often get to sit up front at performances and those who accompany me do too!
  • Spidey Senses – As I’ve discussed on here before, it’s a myth that when you lose one sense, your other senses are automatically better. Often times though when someone loses one sense, they become more dependent on the other senses so they concentrate on them more, thus giving off the impression that they are automatically better. I know who is coming down the hall often times at the office by their footsteps, their shoes, or some other indicator. A lot of what I can’t pick up on visually, I can audibly or tactually.
  • Dirty Looks – If other people give me dirty looks, I often won’t see them.
  • Designated Driver – I never ever have to be the designated driver – win!
  • Problem-Solving – I have had to problem solve a lot more than many of my peers have, to do the simplest of tasks. Many bigger problems don’t phase me any more because I’ve become so accustomed to staying calm and just working out the problem.
  • One car household – Steven and I will only ever have to pay one car payment and one car insurance payment per month. Now, the not being able to drive thing does suck a lot on most days but this is definitely one of the advantages.
  • Knowledge of governmental agencies/legal agencies – Unfortunately, I have been discriminated against on multiple occasions due to my blindness and/or using a service animal. I have learned a wealth about the Fair Housing Act, Americans with Disabilities Act, Air Carriers Access Act, as well as the complaint processes through HUD, Department of Justice, and Disability Rights Texas.
  • Career Choice – Losing my vision led me to the Department of Assistive and Rehabilitative Services Division for Blind Services several years ago as a consumer and transformed my career path into becoming a Vocational Rehabilitation Counselor for the agency. I absolutely love what I do and don’t think I would have found this career path without my vision loss.
  • Empathy – My job is all about working with individuals with disabilities to transition out of high school. I feel like I can empathize with my consumers on a deeper level in some ways as I’ve experienced a lot of what they have experienced, just maybe in different ways.. especially if it relates to transportation.
  • Self-Confidence – My self-confidence has increased exponentially as I’ve had to “sell myself” as in show my strengths to various people, such as employers, and have developed a strong level of confidence in my skills, strengths, and abilities.
  • Tough Skin – I’m still pretty sensitive about many things but my skin has definitely become thicker since losing my vision as I’ve had to deal with some pretty difficult things.
  • Friends – I have met so many wonderful people through my journey as a person with vision loss. One of my very best friends I met specifically because a mutual  friend knew we both had the same eye condition (Retinitis PIgmentosa) and introduced us.
  • Presentations – When I’m giving large presentations, since my peripheral vision is so narrow, I can’t see more than one person in the audience and I can’t see them with any definition. Many have joked about this in the past but I do think that this has helped me over the years cut down on the anxiety of presenting in front of large groups a little bit.
  • Technology –  I have always loved technology but especially now that I depend on technology for many parts of my personal and work life, I am pretty skilled with all different types of traditional technology and assistive technology. I am able to provide a lot of assistance to my sighted/non-disabled peers on a daily basis because I have had so much experience with it.
  • Guide dog/Makiko – Last, but certainly not least, I have had the opportunity to be partnered with Makiko, my beautiful guide dog, who has encouraged me through some really tough times, has taught me to be confident, has shown me how independent I can be, and is always so loving. Through her, I have become really involved with Guide Dogs for the Blind, taking on a leadership position as one of the founding Presidents of our state Alumni Chapter, “The Eyes of Texas,” participating with Lone Star Guide Dog Raisers, our local puppy raising group, creating and facilitating “Guide Dog Handlers Network,” a Facebook social/support group for guide dog handlers from all over the world, and giving presentations in the local community about guide dogs, service dogs, the ADA, and blindness etiquette. I did a few presentations before her about some of these topics but she has opened many doors for me.

I have gained so much as a person with vision loss. Sure, I have lost a few things too (such as my ability to drive) but what I have now is beautiful. I love the life I live and I love the opportunities being a blind young woman has given me.

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