Eight Things I Will Miss About Being A Full-Time White Cane User

I hated my white cane but this is very true about the benefits of a white cane over a guide dog lol

Opportunity Unleashed

I admit it. Me and the white stick have a bit of a rough history. Stories of losing them in rivers and storm drains aside, the canes of my youth were mostly abused in the fact that they were neglected.  I did not often use it as a child and teenager, and when I did it was only in preparation for getting a guide dog as soon as I turned 16. I hated the cane in those days… in fact, I can honestly say I had a healthy disdain for it until quite recently. Throughout my college years, I grew to accept my cane as a useful piece of equipment, but it was still one that I preferred never to use unless forced by circumstance.

Over the last several months though, since I essentially hung up the harness in the spring, my grudging respect for my cane has developed into…

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A new beginning

It brings me great joy to read about others experiences when they are matched with their guide dog. Also really love to hear how different schools handle different things, such as contact with puppy raisers.

seeingtheworldblind

All most one week down here at the Seeing-Eye. It’s gone quickly I was matched with a German Shepard named Frasier. He is so handsome. My instructor Brian brought him in to me after two walks to determine my dog they’d match me with. He described him to me which was cool. I can’t remember all of the colors, but he feels amazing.

We’ve walked twice a day, and did some complicated routes. Feeling him push me around something or passing someone is awesome. I really feel how much Robin slowed down the last year or so. I’ve called him Robin a few times, but I feel now that I’m honoring her by doing this. She paved the way for me to feel confident enough and give me my sight back. Me doing this is saying hey you were successful, and I miss the partnership.

Boys have advantages one is…

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The Raw Emotions

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

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

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

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

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

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

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

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

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

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

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

And that’s okay.

Labor Day

Today was a much needed break. Work has been pretty hectic lately as it was the end of our fiscal year and then yesterday I helped one of my best friends (who also has RP) unpack her new home. Steven and I were on our way home from an adventure with Makiko and I started to wonder… What’s this history behind Labor Day? I mean, I knew that it was to honor the Labor Movement, but didn’t really know much beyond that. (I’ll admit, history is NOT my strength). I learned that Labor Day was first proposed in the 1880’s to honor workers, the strength, prosperity, and well-being they bring to this country, and the social and economic achievements of American workers. This is pretty neat.

However, I immediately started thinking about my job and that is to assist individuals with disabilities to obtain and maintain employment. There have been HUGE improvements in employing individuals with disabilities, but we still have more room to ve a grow, of course. I believe this is especially true for employing individuals who are blind. There are so many very qualified individuals with visual impairments who have advanced degrees, hold impressive licenses and certifications, and are overlooked almost automatically when their vision loss is discovered through many parts of the application process.

i mentioned this statistic before but it still really blows me away (in a bad way) and makes me sad. The percentage of working aged adults who are unemployed is 70%. The percentage of working-aged adults with vision loss who live in poverty is 30%. While there are cures for many eye conditions, the rate of blindness is supposed to double by 2030 due to the country’s aging population.

We are in luck that the advancements of technology are astounding and employing individuals with blindness is becoming easier and easier as a result. By 2030, there will be even more amazing advancements that will make it even easier. Unfortunately, many employers won’t even give applicants with blindness the chance to show how they can use technology and other accommodations to be productive employees of their company and make a difference. There have been many stories and studies published in the past few years (such as those from New York Times and American Federation for the Blind) that show blindness is more feared than any other condition. I know this fear in American and more specifically the fear among employers in hiring individuals with blindness is the lack of education and exposure to individuals with vision loss who are successful, independent, productive, and contributing members to society..

Recently, I spoke with a co-worker about the benefits for hiring people with disabilities which include (in general):

• Higher retention rate/Loyalty to company – People with disabilities tend to stay with their employer longer when they find an employer that is accommodating and they enjoy because it IS so hard to find sometimes.
• Reliable employee – Employees with disabilities tend to take less d of leave and work harder because they do appreciate the opportunity to work and the opportunities they have.
• Increase diversity in the workplace – This is pretty obvious but there are many types of diversity – age, race, gender, sexual orientation, disability, etc. People with disabilities bring a unique type of diversity to the workforce.
• Creativity in problem solving – While accommodations are in place and help try to make it an equal playing field, there are inevitably problems that arise that an individual with a disability needs to figure out. There are so many things that aren’t accessible or work-able based on your disability but people with disabilities get pretty creative to overcome these obstacles and have a pretty unique ability to problem-solve.

A supervisor or hiring manager may not know how the applicant can perform certain tasks or how things will look, but thats a dialogue that can happen with the employee after hire. Those things can often be figured out but personality and being a good fit in the work environment is less easy to train or figure out.

When I was hired at my current job as a Vocational Rehabilitation Counselor, I was blessed to not be discriminated against due to my vision loss. Sure, there were questions about how I would be able to do parts of my job (such as the significant amount of traveling on a daily basis), but they were going to let me figure out that out, with their support… and I will NEVER forget that. (I learned this later of course, not at the time of hire or not even in the first year of my employment). Many members of management had no experience with supervising individuals with vision loss, but they were willing to learn. SO important! Now, one may say.. well that’s how it wor be, you work in the disability field!” While this is true, there are still many managers in this field who don’t accommodate vision loss that well or aren’t willing to learn.. There are obviously even more outside of the disability community who don’t accommodate people with vision loss very well, or are afraid of vision loss and/or not willing to learn and this makes it very hard for people with vision loss to obtain competitive, integrated employment.

My hope is that more employers look at the individual for their education, strengths, assets, skills, personality, and abilities and hire the person accordingly and then have open dialogue with the employee to work out the accommodations piece later. There are so many amazing people with blindness who would be excellent contribute ons to the workplace, if given the chance.

We, as a nation, have come a long way but still have a long ways to go. Please think about what you can do, in whatever capacity you serve your communities today, to make a difference. Diversity strengthens any workforce.

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

Guide Dog Equipment and Upkeep

Did you know there are three parts to a harness?

 

At the top of the picture is the harness handle, followed by on the left is the body of the harness and in the bottom right there is the small belly strap.

There is the harness handle: 

 

There is the body of the harness:

There is the belly strap:

Other common pieces of equipment for guide dog teams are the leash (of course), the collar (different collars are used but many from GDB use martingale collars), and many guide dog teams often use gentle leaders as well. (No, they aren’t muzzles). A martingale collar is where it has a few chain links (not prongs), so that if you need to do a correction, you can, but the rest of the collar is fabric so it is comfortable for the dog. A gentle leader is a piece that goes across the dog’s nose and behind their neck and is very useful to a blind handler to feeling where the dog’s head is moving so that they can make necessary corrections if needed, but also many guide dogs are on their “tip top behavior” when wearing this.
A few months ago, I started to notice a few different things about Makiko’s equipment:

1) It was looking pretty beat up/used. I noticed it needed to be cleaned and spruced up a little bit. Why does this matter? Makiko and I are constantly in many different professional environments for work, but every single guide dog team is also an ambassador for their school and also the guide dog community as a whole. Makiko is an extension of me. I care about my appearance and care about hers, but I also care about the equipment’s appearance.

2) I also have been noticing over the past year or so that there has been more of a gap between Makiko’s body and the harness. At a recent guide dog event, I heard a few other handlers say that they have also had this problem.

3) Makiko’s collar was getting pretty worn out and pretty quickly after adjusting it to be tighter, it would go back to being loose. So, our field rep also sent us a new martingale collar.

So here is what I decided to do about it:

My boyfriend and I stopped at Home Depot when we were out running errands. We got “Leather Cleaner and Conditioner.” This stuff did WONDERS. We had purchased some leather polisher a few months ago but read on “Guide Dog Handlers Network,” a group I admin on Facebook, that really it should be washed first with something that works well with leather. It took me all of 15 minutes with this leather cleaner and a shop towel to really get her harness looking better. (Why didn’t I do this a few years ago?)

When our field rep, Michelle, was out a few months ago, I showed her the concern I had with the gap in the harness. We discussed a few different reasons it could be there, such as the leather just slightly changing shape. She suggested that she send us a body piece that is one size smaller and see how it fits. She sent this to us awhile ago but we hadn’t gotten around to trying it until just now. Since we were working on her equipment, we figured that it would be a good time to do it. So far, we are pleased. Why does this gap matter? Most importantly, having less of a gap can increase the amount of feedback the guide dog handler can get from the harness. It could also potentially make her a little more comfortable (although I don’t think she was really uncomfortable at all in the first place).

The harness body on the left is the one that Makiko has worn for 4 years. It has a pretty distinct shape and has been thoroughly worn. The harness body on the right appears to be brand new. It looks “squished” because it hasn’t been worn and the leather is quite stiff. 

In this picture, you can see the gap between her body and her chest strap, right above her shoulder. This is with the old harness body. 

This is a picture of her with the new harness body. You can see barely any gap. It does need to be worn in a little bit but looks significantly better fitting. 

My view looking down at Makiko in harness. (Note: There is no leash because we are simply just trying on the harness)

She also gave us a new martingale collar to try out. I didn’t take a picture of it because it looks exactly the same as the old one but if you’d like to see it, let me know.

So now we will put it all to the test tomorrow as we go to work and about our day and see how she seems to feel it in and how it feels to me as we work. I’ll bring the other piece along just in case something does go wrong or bothers her.

Did you know that a full harness can cost as much as $500 for this specific type from GDB? That’s pretty wild, huh? Thanks to the generous donations of donors to GDB, we don’t have to pay when we have equipment problems like this. If we lose it once, we do get it replaced at no charge to us but if we lose it again, we do have to pay for it. I know weird things happen, but to me it’d be pretty hard to lose something like this. 🙂

GDB is so incredible in supporting the guide dog team throughout the whole process and I have been nothing but pleased. They are very innovative and receptive and want to find what makes the most sense and works the best for each guide dog team. They also recognize that what works best and is necessary might change over time and they are totally cool with working through each team as they go through any changes.

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

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

Official GDB Graduation Photo – March 16, 2013

A picture shortly before graduation with Jaymin Nowland, our amazing trainer, myself, and Makiko in front of the fireplace in the lounge

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