My Blindness Doesn’t Make Me Inspirational


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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

As featured on “The Mighty”:

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

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.

The In Betweeners (Autism and Blindness)


Professionally, I work with high school students with disabilities to help them transition out of high school. A large percentage of my caseload is Autism. I absolutely love this population and continue to learn ways to serve them appropriately. Up until the past few years, there was a subset of Autism called Aspergers Syndrome, which was “high functioning” Autism. Most times these students were quite bright and could academically handle school with or without accommodations but it was the independent living and social skills where they really struggled. For this reason, it was often hard for agencies and school systems to figure out the most appropriate classes or services because they were “in between”. Aspergers Syndrome is no longer an official diagnosis according to the DSM-IV.. It’s now just the Spectrum. Those on that high functioning level of the spectrum still are often “in between.”  I was working with a family recently and they said that they called their son an “in betweener” his whole life. 

I can SO relate.

Being partially sighted is a blessing and a curse.. I am an “in betweener.” I can see enough to sometimes identify faces but not enough to read a lot of print or see changes in elevation. I can see enough to tell if my destination looks somewhat familiar but not enough to read any signage or see anything with any certainty or clarity. I can see enough to make eye contact most times but that throws people off to where they think I can see more than I can. I am an in betweener.

It is a blessing because I have lost my sight over time and therefore been able to use what little sight I had to adjust and continue to develop more skills for my continued vision loss. I have been able to get two college degrees and learn my State job with some sight. (This has been a HUGE blessing to me because it definitely has been easier, I think, to learn this job partially sighted than learn it with no vision- the paperwork is bountiful). 

But it’s also a curse having partial vision. I have to adjust to vision loss again and again.. Sometimes I wish it would have just all happened at once so I could get the adjustment to my disability over with and move into. Instead I have to constantly adjust as do the people around me. I go through the grief cycle with many of my vision changes. It’s exhausting. I am not deemed appropriate for some services because I am partially sighted but do need them. It’s just a tough spot.

I am also pretty self conscious at times about being partially sighted. I feel like people sometimes (or really most of the time) don’t get why I need the Assistive Technology, Accommodations, and guide dog. My eyes fatigue super easily. So if the print and lighting is just right I may be able to read a little bit but then by the end of the document, I won’t be able to read it anymore. It will just be a giant blur and I’ll have a headache. But to some people because I could read those first few words, I’m not that visually impaired. They don’t get the fatigue thing and that the light in the room has to be just right, the font just the right size, the contrast just right, and I have to have not been exhausted at that point. The chances of all of that happening is very slim which is why I have amazing Assistive Technology. I also have an assistant at work that is able to devote a lot of time to me and my caseload and spends EXTRA time reviewing everything that I send out and receive because I do miss things. It’s not just because I want an assistant all to myself, but because she has to do a lot more double checking and paperwork type tasks than my sighted peers do. But look, with the right accommodations, my performance at work is great. The same applies tons guide dog. Because I can make eye contact with you and can travel so easily, people don’t think I need a guide dog. What they don’t realize is that I may be able to make eye contact with you but that’s all I can see if I’m looking at your eyes.. I can’t see your hair, mouth, etc. My vision is that tunneled. So if I’m walking down a sidewalk looking right ahead, I won’t see cyclists who are coming down one side, I won’t see fire hydrants or any obstacles in the path, I won’t see any tree limbs hanging overhead, and I can easily get turned around. Additionally, if the sun is too bright, there is any overcast, or it is too dark or rainy, I’m essentially totally blind. With the way the weather changes in Texas, this is often. I also am able to function so well because of Makiko. People don’t realize how many subtle cues these guides give us. For example, Makiko will often put her head on a chair if she knows I’m looking for it. Or she will take me to the same spot each time. So while it just looks like I’m doing just fine, it’s really her. 

It is a self conscious thing because while I shouldn’t care what others think, I do know and have heard that they don’t think I need certain tehnology, accommodation so, or my guide because I’m partially sighted. And that hurts. 

I do look sighted. But what does blind look like? Let’s fight the stereotype that blind people wear sunglasses all the time or have glossed over eyes or can’t make eye contact. There are so many complex eye diseases out there and the blind people that have them DONT fit into that stereotype. Fighting that stereotype will help people like me, an in betweener, have less conflict due to my vision loss on a daily basis. The less we stereotype people with disabilities, the more opportunities they/we will have to be independent and contributing, working members in our society. 

Letter to PetSmart about the near deadly Femur Bone


(Read here for the full story if you haven’t read about our scary incident with a gifted bone recently.)

Dear PetSmart,
I have bought many things at your stores over the years, from equipment to COUNTLESS number of fish, gerbils, dog food and treats, etc. Recently, I was pleasantly surprised that you started carrying Natural Balance dog food as this is the dog food that my guide dog eats. I am blind and I depend on my guide dog to live independently and maintain the very active life I do. Therefore, since Natural Balance is the food that works for her, even though it is a little more expensive, I buy it for her because we only give her the best. PetSmart sells Natural Balance a few dollars cheaper than one of it’s competitors so that made me shop at PetSmart even more.

However, I recently almost lost my guide dog due to a PetSmart product and I am absolutely horrified that these products are on your shelf. When I thought that PetSmart only carried the best of the best and therefore was a safe place to shop for my guide, I realized that this isn’t always the case. A good trusted friend went to PetSmart and bought Makiko an $8 or $9 Dentley’s femur bone as a Christmas present. We had delayed Christmas with her family. She ate it on a Thursday night and by 2:15am, she was vomiting profusely. She continued to do this off and on all throughout the night and the following day, which led me to not be able to go to an important meeting and instead when my dog was not wanting to move, puking constantly, and very uncomfortable, I took her to the Vet who had us rush her to an Emergency Hospital, where she had a gastrotomy to remove all of the pieces of bone that had become stuck in her stomach and would perforate her intestines if they continued to try and pass. As a result, my guide had an incision about the length of her belly, wasn’t able to work for weeks due to the incision and medications she was on, and my life and her life have been significantly affected by this. I now know not to give her any femur bones as these are horrible for dogs, according to many articles and pretty much any veterinarian. So, why does PETSMART carry this item still? I just don’t understand. Pet owners trust PetSmart to carry safe items and this item is NOT safe. There are numerous stories online if this same thing and similar incidents happening. PLEASE take this item off your shelf.

Thank you,
Jessica Naert and Makiko (Working Guide Dog)

Stevie Wonder at the Grammy’s


 

“We need to make every single thing accessible to people with disabilities.” -Stevie Wonder

Check out this link:  http://www.slate.com/blogs/browbeat/2016/02/15/stevie_wonder_reading_the_envelope_in_braille_was_grammys_2016_s_most_charming.html
I usually don’t care about the Grammy’s.. At all. But it was really cool to see Stevie Wonder singing a tribute song with one of my favorite bands, Pentatonix, and cracking a joke about how they can’t read the contents of his envelope because it’s in Braille. He was quite charming and funny about it but the point deep down is people with disabilities, especially print disabilities such as blindness, can’t read much of the print in this world, whereas Pentatonix cannot read only that one document. 

For those who may not know, Stevie Wonder is an amazing musician who is also blind. Some people to this day don’t believe he is really blind because he is that good. 

After his little joke today, he said that every single thing should be accessible to people with disabilities. How true is that?! It is awesome that he incorporated that into the Grammy’s! 

“Oh darling, what if you fly?”


There is a young girl with fairy wings on. The whole picture is sepia toned. In the middle of the picture there is a box of text that reads ""What if I fall? Oh, but my darling, what if you fly?" - e.h. "
“What if I fall? Oh, but my darling, what if you fly?” – e.h.

This picture was posted on the RP Truths Facebook page. It really appealed to me. As anybody goes about their day, there are multiple opportunities for them to succeed or fail. I feel like as a person with a disability, we have a lot more opportunities for success or failure, even with what people would think were the most basic things, such as walking to a new destination, making a new recipe, or trying to do something new online.

However, these are opportunities or experiences that we all must have. For if we don’t try, we obviously won’t have the opportunity to succeed. Over the past year, I have been pushed past my comfort zone and limit in many areas of my life. Sometime I’ll share some of them. However, by being pushed by others or pushing myself, I have shown myself that I can do way more than I sometimes think I can and I have also been able to show the world and those who don’t think I am as able as I am, that I am ABLE and I can succeed.. I can FLY!