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/

Emergency Preparedness


A red text box with white letters - TORNADO WARNING DENTON CO
Tonight’s weather was a little scary in Denton, but mixed with a few circumstances, it got my adrenaline running! I’m usually pretty good in emergency situations. 

I moved into this rental house a few months ago. I’m pretty familiar with it obviously by now and we have a few items ready to go in an emergency but I hadn’t thought about where I would take shelter. Makiko was eating dinner (with a special treat) and I got the notification to “TAKE SHELTER NOW!” I looked it up real fast online and indeed saw that we needed to take shelter. I spent about 3 sec thinking about where to take shelter, realized all rooms had windows, so I picked up the phone and called my handy dandy resource for everything, my Mom. We chatted for less than a minute and then off to a closet we went. My house is pretty open and we have windows in every room, even the bathroom, with no closed halls.

When I decided that we were headed to the closet, I called Makiko to come and she came IMMEDIATELY. Now that’s some good training. She loves her dinner, especially when she has a little treat topper, so that really impressed me. We hung out in the closet with pillows as Facebook notifications came in, more emergency alerts, texts from Mom and one of my best friends, and we just watched the storm pass online. When the hail hit, that was intense. Tennis ball sized hail was reported and the tornado did touch town about 30 mins from us. Once we got the all clear, we stayed in there a little longer and then went out to the living room, where I am now typing this as I hear lots of emergency vehicle sirens going off outside. Praying that everything turns out ok. 
Oh, did I mention that we did this all without electricity? 

With all this in mind, I wanted to share a few tips that I had heard throughout the years for people with low vision or blindness in emergencies. This list isn’t for tornado specific emergencies but rather can be applied to many situations. 

  • If you have a guide dog or service dog, make sure to take their leash to the closet or wherever with you. You don’t know how the dog will react if it gets pretty serious and this can keep the dog safe and with you. 
  • If your service dog gets panicked and is unable to work out of the emergency situation, such as a fire, have a backup plan such as knowing where the emergency exit is and just going as fast as possible by feeling walls, etc., or if possible, heel your dog beside you and use sighted guide. 
  • Know where the closest exits are in any building. Remember if you rely on audible cues to help you navigate a situation (such as the sound of a coffee maker, you may not be able to use these if the electricity is out etc. 
  • Have a few contacts in your phone listed as Emergency Contacts so that others can find them easily if they need to call someone on your behalf. 
  • Make sure you know where the fire alarms are and how to activate them. There are many different kinds of alarms, some you have to break through to activate the alarm. This can be challenging for a sighted person and definitely for someone with a visual impairment in an emergency. 
  • If you work, have someone that you trust that will be your buddy if you need help getting out
  • Know how to use the emergency button in an elevator, or at least where it is. 
  • Make sure you keep your necessary assistive devices and medication in one place so that you know how to get them, if you have the chance to, in a hurry. Make sure to know your pharmacy info in case you have to get a prescription filled if you are evacuated, etc. 
  • Know where the gas and water shut offs are in your home and how to use them
  • Grab your cane, even if you are a guide dog user, if possible on your way out. (Obviously if it was a fire, you wouldn’t probably have time to do this, but if you are evacuating or have a little time, this is smart) 
  • If you have to evacuate, make sure you take everything you will need for at least 3 days for yourself and your service animal, including food, water, a toy, and a portable bed. . 

Emergency situations can be scary for anyone, especially if you have a disability. The American Red Cross and local disability organizations often have tips as well about how to prepare for an emergency. 

Discrimination 


Discrimination has been in the news a lot nowadays, especially with the Trump administrations view on Muslims from certain countries and the Mexican-American border. Recently, I experienced discrimination due to my use of a guide dog and hit me harder and in different ways than before, and I think a large part of that is because of all the discrimination happening in this world nowadays. 

I was in Houston for a work conference and was out with co-workers, some I knew, some I didn’t, for my best friend’s birthday dinner. We both work for the same amazing agency, as counselors, just in different offices. I walk in and am immediately thrown off a little bit because of the dim lighting which makes my residual vision go away. Immediately, as in I had only taken two steps inside, I am asked if Makiko is a service dog. I said yes. We went closer to the table. I sit down, am asked by somebody else. I say yes. I hadn’t even sat down long enough at the table to get Makiko fully settled before this second time being asked. Throughout the night I am asked about 4 times. However, what really really got me upset was I was sitting a few seats away from my best friend’s husband. He was the only male there at this point. He asked me if Makiko had papers. I thought he was just curious although I was pretty sure he should have known the answer. I said she did have an ID. He then said “this gentleman would like to see them.” I hadn’t even seen the man standing behind him at this point. I said “well he can’t..” and then the guy said to me with a very disgruntled tone “ok..” and then walked away. As we were leaving, the waitress was so excited to see Makiko and had NO idea that Makiko was under the table. That is a compliment and how it should be. 

However this “does she have papers?” thing really got to me. I later found out that the guy friend who the staff asked this question to tried to explain to him a few times that I am blind and she is my service dog before he really insisted on seeing papers. It bothers me that he was that insistent. It also bothers me that he asked the male at the table, not me. Finally, what really bothers me is im fairly sure, but not positive, that the gentleman who asked had already asked me earlier on if she was a SD. This was harassment. What has really resonated on my heart though is the “do you have papers” comment and how there have been a lot of members of the immigrant community and even permanent residents and citizens of different ethnicities have been asked this recently. Now I am being asked about my service dog, and not myself, but it still struck me pretty hard.. as if they didn’t think we had a right to be there. 

Under the Americans with Disabilities Act, we are only allowed to be asked if she is a service dog and what tasks is she trained to perform? I found in Houston in general they asked this far more than any other place I have travelled. We went into one restaurant and my friend’s everybody was giving us the stink eye. I haven’t had this much trouble or stink in a long time. 

I have several very close friends who are undocumented. I have a lot of friends who are legit scared of losing their loved ones for a while do to being of a different ethnicity. 

I did write the business that did this and they were pretty receptive and apologetic and said they would be following up with the staff that night personally as well as sending out a message about discrimination to all employees. I appreciated that and their response was better than most people have responded with reported discrimination. 

There is just something really wrong about all of this, what happened to me in the restaurant but also what is happening in our country right now. It leaves you literally with a bad taste in your mouth, feeling depressed, and sick. 

When can we go back to loving our neighbor? Loving all.. 

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


branding.jpg
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.

eyemask.jpg
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.

https://www.facebook.com/plugins/post.php?href=https%3A%2F%2Fwww.facebook.com%2FFoundationFightingBlindness%2Fposts%2F10154636688204917&width=500

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.

 

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.

International Guide Dog Day


Happy International Guide Dog Day. This is a very special day for guide dog handlers and their guides across the United States. We honor and cherish our guide dogs each and every day but today is a very special day to honor them. I would like to share some Guide Dog 101 information with you in honor of today. This post is intended for people who do not have  lot of knowledge about guide dogs but also those who are very active in the guide dog/blind community.

Makiko, a black labrador retriever, is photographed at her level next to her handler, Jessica. makiko is in harness and her “do not pet me” sign is visible. Makiko is focussed straight ahead and is not paying attention to the photographer.

Fact of the Day: Only about 2% of people with visual impairments travel with a guide dog. To me this is WILD. I do understand people’s reasoning for NOT wanting a guide dog, such as the additional responsibility, attention, and costs associated with a guide dog, but to me the pros so outweigh the cons. I also understand that there are many very confident cane travelers out there. While I CAN use a cane if I needed to and would be able to safely navigate my environment, it is just NOT my cup of tea. There are many reasons for this but I believe the biggest two are: 1) I like that my dog moves me AROUND obstacles, as opposed to the cane just finds them and 2) Having a guide dog breaks a lot of the social awkwardness that society tends to have when greeting or socializing with a blind person. Choosing the guide dog lifestyle is a huge decision but it is one that i hope more and more blind people choose.

Guide dogs mean so much to their handlers: independence, freedom, safe travel, confidence, ability to travel gracefully, peace, partnership, companionship, ability to “live more, our best friends, and our family. We establish such a deep connection and bond with our guide dog, it’s indescribable.

Guide dogs have many great skills – helping their handler travel in a straight line from point A to point B (something I had some trouble with when using a cane), stopping for all changes in elevation, such as stairs and curbs, stopping for overhead obstacles, such as tree limbs, and avoiding obstacles in their path. They are also taught to be “intelligently disobedient.” What does that mean? If the handler gives the dog a command and the dog determines that it is unsafe to obey that command, the dog will disobey and not listen. Many times the dog will make another decision to replace that command but still accomplish the same goal. Guide dogs also of course have to have impeccable manners because they go practically everywhere with us. I can’t tell you how much it makes me smile when others tell me that they didn’t realize a guide dog was in the room or under my feet/table because she is so well behaved and quiet. This is how it should be.

Guide dogs work hard but also play hard. To keep up the bond and help the dog continue to love their lifestyle, guide dog handlers give their dogs lots of opportunity to play and just be a DOG (a well behaved dog though) when that harness comes off.

Most guide dogs work for around 8-10 years. They are usually 1.5 years old to 2 years old when they graduate guide dog school so around 10-12 years old, most guide dogs retire. At Guide Dogs for The Blind, the handler has the option of keeping the retired guide when he/she retires even if they are getting a new guide, giving the retired guide to a family member or close friend, giving the guide back to his/her puppy raiser, adopting him/her out, or giving her back to Guide Dogs for The Blind as they have a long waiting list of people that love to adopt retired guides because they are so well behaved. If I don’t keep Makiko, I plan to give her to my Mom. Makiko and my Mom have a very special bond (yet the bond doesn’t interfere with our work together). My sister has claimed my second retired guide! 🙂

Guide dogs help their handlers with travel, but there is a huge emotional aspect to them as well. The companionship and loyalty of a guide dog is so strong. When I have rough days, Makiko, loving on her, and just sitting with her is one of my biggest coping strategies. She can tell when I or someone I love isn’t feeling well or happy and comes to give us LOTS of attention. (Beware of all the kisses!) As many of you know, I graduated with Makiko 2 months after my father passed away so Makiko has been an extra level of companionship and comfort for me through the grieving process.

In addition to helping our emotional well-being through their companionship, when you get a guide dog you have an instant support system and community. The sense of community with guide dog handlers has been one of my many favorite parts of becoming a guide dog handler. Guide Dogs for The Blind is one of the only guide dog schools that has an Alumni Association and the bonds that handlers form because of this is so powerful. However, guide dog handlers from across the world also come together on social media and the internet and have powerful discussions about guide dogs and issues surrounding our community. It is an honor to be a part of. I’m working with another guide dog handler from Houston, Vince Morvillo, to start a Guide Dogs for the Blind Alumni Chapter in Texas. We should be official in June! As I’ve mentioned, the community of guide dog handlers is very strong and very therapeutic. It only makes sense that the GREAT state of Texas has an Alumni Chapter.. did you know that according to NFB (National Federation of the Blind) Texas is one of the largest states of people with visual impairments?

It also only makes sense that we have one of the GREATEST groups of puppy raisers, Lone Star Guide Dog Raisers (LSGDR), that is growing exponentially!!!!! I know I’ve said it a thousand times before but we really wouldn’t have the guide dogs that we do without such devoted puppy raisers and Guide Dogs for The Blind staff that supervise and help train these puppy raisers. These puppy raisers are also great advocates for the service dog and blind communities!

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Below is additional information about guide dogs that I would like to share with you:

Training:
The different schools and handlers have many different ways of training or reinforcing their dog’s behavior, such as using food rewards, positive reinforcement, collar corrections, clicker training, and a Gentle Leader/headcollar. Please note that guide dog handlers are trained in the proper way to reward their dog and positively reinforce good behavior when the dog is working well and behaving properly, but also how to safely and effectively correct the dog when they are not. Doing a collar correction right will not hurt the dog but will get the message across. The same applies with a Gentle Leader/head harness. Many think that these are muzzles, which they are not. I put one on Makiko this last weekend when we were around over a hundred dogs and it naturally just keeps her attention on me a little more but also gives me a little more control. She can still eat, drink, open her mouth, etc., with one on.

(I would like to think that no guide dog handler is abusing their dog with corrections but of course if you suspect abuse or neglect, please look on their harness as there is usually identifying information about what school the guide is from and call the school to let them help take care of it.)

Feeding and Relieving:
Guide dogs are on a specific feeding and relieving schedule to help make their handler’s day go smoothly and so that the guide dog doesn’t need to go to the bathroom during an important meeting or event. Most guide dogs are fed and given water at specific times each day, and of course given additional water as needed. Because of this routine, they have specific relieving habits that make it pretty easy on the handler to schedule into their day. This is another reason why it is important for others to not give food or treats to a guide dog because it will interfere with this.

Pedestrian Travel:
Because guide dog handlers can’t drive, they often travel extensively on foot. With the help of their guide dog, they can safely lighted intersections and streets. It is important that the guide dog pay VERY close attention when doing this so that they can pull their handler out of the way if needed. Please remember that guide dogs and their handlers have right of way ALWAYS.

Sighted Guide:
There are some situations when handlers may choose not to work their guide and heel their dog beside them. If this is the case, the handler will ask to stand on the person’s left side and take their arm. The handler will take the arm of the sighted person. They will usually grab right above the elbow. Please don’t try and drag a blind person with or without a guide dog. That’s not fun for anyone. 🙂 Please also do NOT grab the harness handle or leash from the blind handler. This will totally confuse the dog and the handler and could potentially cause a disastrous situation. Using your voice is much more helpful to help give them appropriate directions.

Access:
Guide dogs are required access at public accommodations by the Americans with Disabilities Act, Section 36.302(c). Public accommodations are required to modify their policies, practices, and procedures to permit people who are blind or disabled to be accompanied by working dogs anywhere. There are some places that aren’t open to the general public, such as operating rooms and kitchen, that guide dogs aren’t required to have access to, for health and sanitation purposes. A good way that somebody taught me to remember it, is if I’m allowed to walk in there with my tennis shoes on or other regular shoes on, my guide is allowed to walk in there. For example, Makiko wouldn’t be able to walk into an operating room because it is a sterile environment and it is not open to the general public.

If the service dog gets out of control and is having relieving problems inside the establishment, growling, barking excessively, etc., the owner or management has the right to ask the dog/handler to leave the facility as it poses a direct threat to the health or safety of others. The handler is required to be permitted back into the establishment without the service dog on the premises if this situation occurs.

Hotels/Lodging:
Hotels and other places that allow people to stay their for a fee are not allowed to charge a pet/animal deposit or surcharge for the guide dog, as they aren’t a pet after all. (This is when it helps to think of them as medical equipment, not an animal). However, if the guide dog causes damage to the hotel room or furniture, the hotel IS allowed to charge the handler for the cost of repair if it is their practice to charge non-disabled people if they damage the property as well.

Fair Housing Act (FHA):
Landlords are required to make exceptions to their “no pets policy” to allow a service dog handler to have their service dog live with them. This is called a “reasonable accommodation.” (Under the Fair Housing Act, they define service dogs under the “assistance animal” umbrella and emotional support animals (ESAs) are also under this umbrella). Pet restrictions and charges for animals do NOT apply to assistance animals – a landlord cannot charge a pet deposit for a guide dog. A landlord cannot deny a request for a reasonable accommodation based on a dog’s weight or breed, even if they don’t allow normal pets to be above a certain weight or to live on the premises if they are a certain breed. Landlords CAN require you to provide a letter from a doctor or therapist, depending on the type of service animal, documenting the need.

Taxicabs/Uber/Lyft: 
Public transportation companies CANNOT discriminate against you and deny you because of your service dog, even if they are using their own car because they are providing a service to the public. The only exception to this is if the person has severe allergies to dogs as this could potentially be covered under the ADA as well and in that case many times are required to have a note on file with their company documenting this and are required to secure another ride for the passenger with the guide dog/service dog.

Air Carrier Access Act (ACAA) :
Guide dogs are permitted to accompany their handler in the cabin on flights. The dog is allowed to accompany their dog in any seat the handler chooses, except emergency exit rows and if the dog is going to stick out into the aisle and pose a safety hazard.

Distractions:
Makiko is very cute and lovable, as are most guide dogs. Depending on the day, Makiko may soak up the love or if she is particularly focused, she may not. However, like most dogs, if you greet them excitedly or make kissy noises, guide dogs may very well get distraction. Distraction can be deadly for a handler, especially if the blind handler isn’t aware their guide dog is distracted to be more aware or to correct it. If a guide dog is safely helping its handler cross the street and watch for traffic, or navigating a particularly environment, and the guide dog gets distracted it might not pull that blind handler out of the way of a smart car that is silent or might not pay attention to that curb and send the blind handler tripping over the curb into the street, landing on his/her face. It’s pretty dangerous. It’s also just an invasion of personal space. Guide dogs are an extension of their blind handler. Many call them “medical equipment,” which they technically are, just in dog form. Would you go up and put your hands all over someone’s glasses? No, of course not, that would be weird and likely harassment. I know guide dogs are living creatures and a lot more adorable than a pair of glasses but they are both pieces of medical equipment that allow a person to function. ABC News posted a great video today in honor of International Guide Dog Day and they quoted a statistic that read: “A survey found 89% of handlers’ dogs have been distracted by members of the public.” The message from the video was “Look but don’t touch.” (or make sounds/attract the guide dogs attention).

It IS okay to ask a handler to pet their dog. A lot of handlers, including myself, enjoy introducing their guide to you. Most handlers will just make sure that their guide is calm and under control, especially if they are in harness. This will help the dog not to become solicitous when it is working and in harness later.
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