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/

HB2992


Today, HB2992 will be discussed in Texas. The bill has been proposed to help the fake service dog issue by making it a misdemeanor if someone puts service dog identification or equipment on a dog that isn’t a service dog. When they do that, they are either misrepresenting themselves as having a disability when they don’t, or if they do have a disability, they could still be faking their undertrained or untrained dog as their service dog. I was interviewed by NBC5 Ben Russell regarding this issue. Read the article and see the video here:

http://www.nbcdfw.com/news/politics/TX-Bill-Would-Punish-Those-Who-Use-Fake-Service-Animals-419593253.html

Overall, what do I think? I love that it is being recognized as an issue by politicians and think it is a baby step toward a solution. 

I wrote a letter to Rep. Victoria Neave’s office. She is who authored this bill.

This was the letter I wrote: 

Dear Representative Victoria Neave:

My name is Jessica Naert. I am a resident of Denton, TX, a Vocational Rehabilitation Counselor, very involved in my community, and I am also blind. I have a wonderful guide dog, Makiko, from Guide Dogs for the Blind and am very active in the guide dog and service dog communities. 

I am very appreciative that Rep. Victoria Neave’s office has taken the issue of “fake service dogs” so seriously and is taking action against fake service dogs by proposing a bill that would make it a misdemeanor by putting some sort of identification on a pet that would identify it as a service animal, when it is not indeed a service animal. I feel this is a good “first step” towards making improvements in the great State of Texas toward diminishing this issue. 

We call it a “fake service dog” issue but really it is not the dog that is committing the offense or faking anything, it is most often a person without a disability wanting to bring their pet animal with them everywhere. Sometimes it is a person who might have a disability but doesn’t have a dog that is trained specific tasks to mitigate their disability, as the Americans with Disabilities Act (ADA) requires. 

When someone is so ignorant to do this, it is harmful for us who have legitimate disabilities and have legitimate service dogs in many ways. First, most often these “fake service dogs” don’t have the level of basic obedience and public access skills, aren’t very well socialized and the environments that their owners put them in cause anxiety and bad behaviors, such as urinating or defecating in places of business or restaurants, incessantly barking, attacking others, damaging goods, etc. Often times when one of these fake service dogs enter a place of business, they put a bad taste in the business owners mouths and then when I go in the place of business with my well-trained service dog, I may be denied access because of that bad experience or experience significant harassment. This is just not fair. It also puts our service dogs at serious risk. There have been many stories of “fake service dogs” attacking a legitimate service dog. Can you imagine being blind and just hearing this dog growling and attacking your dog and often times being pretty helpless to stop it because you can’t see what’s going on? Many times this kind of trauma significantly affects that dog’s ability to be in many types of situations, especially if dogs are around, and tragically the guide dog could need to be retired due to serious trauma or anxiety, physical and/or emotional. This also of course affects the person with a disability’s emotional well-being and can affect their livelihood for years because they aren’t able to live the life they lived with their service animal. Waiting lists for many service dog organizations are years long. 

In the past several years, we have seen a steady increase in people faking a service dog. Something needs to be done and that is why I am so grateful that we are making baby steps toward resolving it for Texans. It is very difficult to resolve this issue because state codes can’t be more restrictive than federal law (the ADA). So, before I go further, I want to express my deep gratitude that your office is taking this issue so seriously and caring about Texans with disabilities who use service animals. 

I do have one concern and would like to make a few suggestions as well. My main concern – how will it be enforced? As I understand it, any time an individual has an animal in a restaurant wearing some sort of identification or equipment that indicates it is a service animal, it could possibly be flagged or reported as a possible fake. This may be what needs to happen but I also can see that this can get pretty sticky because there are many people with invisible disabilities and general society isn’t very knowledgeable of invisible disabilities, so they could automatically assume because someone doesn’t have a visible disability, they are faking. I am a person with a visual impairment but it is not immediately obvious. Would I get reported? Additionally, once it does get reported, how will it be investigated? Under the Americans with Disabilities Act, businesses can only ask the two questions: 1) Is it a service animal? 2) What tasks was the dog trained to perform to mitigate a disability? These are just a few questions I would like you all to consider regarding enforcement. Protecting service dog handlers and businesses from fake service dogs is something that has to be done and more protections need to be in place, but they also need to be careful to still protect the civil rights of people with service animals and their privacy.  

I would also like you to consider adding additional verbiage to the bill. By stating that the person would be committing a misdemeanor by falsely representing their pet as a service animal by some sort of equipment or identification, you are implying if a person without a disability brings in a dog as their “service animal”, they are faking a disability. However, I think that it would be so much stronger if it was specifically stated that faking a disability to get an animal access and/or portraying an animal as a service animal that isn’t task trained to mitigate their disability are both criminal offenses.  

Please feel free to share this as needed. 

Again, thank you for your time and for caring about something that is so important to people with disabilities. Our service dogs are so important to our livelihoods, our independence, and our freedom, and fake service dogs make it so much harder for us. 

Respectfully,

Jessica Naert, M.S., CRC

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


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

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

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

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

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

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

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

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

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

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

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

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

As featured on “The Mighty”:

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

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. 

Thank you for giving me my life back


Dear Makiko,

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

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

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

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

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

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

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

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

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

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

Love,

Jessica

Night Travel


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

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

This pictures below mean a lot to me:

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

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

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

She is my rock star. 

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..