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.

#HowEyeSeeIt


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Picture Description: Medium blue background with white text centered – #HowEyeSeeIt. Above the “y” in “Eye” is a picture of an eye.

Warning, folks – this post is going to be long. However, I really hope you will read to the end to understand this very important issue that means so much to me and thousands of blind people across the United States. There are many links throughout this post. For those who are sighted, you can click anything that is underlined and a different color and it will show you what I’m referring to in that sentence/paragraph.

Many of you have read my Open Letter to Foundation Fighting Blindness sharing my strong opinions and concerns regarding the #HowEyeSeeIt campaign, urging them to modify their campaign to be less damaging to blind people and include blind people in creating their campaigns. This would be much more inclusive and supportive of the blind community but would also strengthen their fundraising efforts as they would have an ally in the blind community, instead of enemies. If you haven’t read the letter, I encourage you to do so before you continue reading as this might make more sense

I feel very strongly about this issue. In my letter to FFB, I wanted to be direct and share my concerns with some emotion but not too much. (We all know that would go on forever if I did so.) However, I wanted to share more of my concerns and emotions with you here.

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Picture Description: Dark blue blindfold with the text – #HowEyeSeeIt

The #HowEyeSeeIt campaign encourages supporters to make a donation to FFB and create a video of themselves blindfolded doing simple daily activities. The video is hash tagged with #HowEyeSeeIt and is shared across Facebook to encourage others to donate and make videos to continue spreading the word. It is a influencer to social followers model campaign. The #HowEyeSeeIt website has campaign materials, including a printable blindfold/mask with the words #HowEyeSeeIt on them, branding, and social media graphics. They also have “example” videos and “featured videos.” They make it pretty easy for someone to participate and spread the word, which is great. However, the message that they are conveying through encouraging these videos and simulations is deeply damaging.

To be very clear, I fully support Foundation Fighting Blindness’ research efforts. I fully support them launching a digital initiative to increase public awareness about retinal degenerative diseases and the important work of the Foundation Fighting Blindness. I DO NOT support marginalizing the population they work (blind people) by employing a campaign that encourages its supporters and viewers to pity blind people and fear blindness.

Many people have become quite upset about this campaign and have written FFB privately and/or posted on their Facebook page. These are blind people and sighted alike. Many of their posts have been deleted, blocked from commenting, and/or blocked from viewing their page altogether. This shows that they are not open for discussion and are just wanting to silence us. I get that they don’t want all the negative publicity but they could encourage those with concerns about the campaign to contact them via another method to at least hear the voices of the group they work with. But they didn’t.

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National Federation of the Blind (NFB) has also spoken very publicly about their concerns regarding this campaign. FFB hasn’t listened or even been receptive to dialogue. Therefore, they are encouraging their Federationists to post a positive video of themselves as blind people doing important or everyday tasks and showing how they are very capable. While I am not a Federationist/a member of NFB, I do intend to do this as yet another way of spreading awareness about the harmful effects of this campaign and how we, as blind people, live amazing fulfilling lives.

Research shows that disability simulations aren’t very effective and actually can do more damage than good. Several years ago, I would have been all over this kind of simulation. However, since going through grad school and working in the disability field and being so immersed in the disability community both professionally and personally, I am not a fan of them anymore. I will say that there are can some simulations that are pretty good if done professionally. For example, the Division for Blind Services came and did a sensitivity training with my office at work since we are going to start working with more blind people as consumers, but also because they work with a blind person (that’s me!). Many of my co-workers found this pretty useful in understanding basic things, such as why moving things in the refrigerator, especially my food, causes me so many problems or why taking a pair of scissors from my office and putting them back in a different place can be so frustrating. However, I wouldn’t encourage them to try and navigate out of their house to a vehicle, put on make-up, play a sport, try and count the appropriate money and pay at a store, etc., because that will just lead to frustration, and then pity, and then fear.

One of the videos specifically instills fear about parenting while blind. This is gut-wrenching to me. One of my very good friends is blind, got divorced, and was going to go through a child custody legal proceeding but was given advice not to, because the Judge in our area for this type of legal proceeding would likely consider her incapable of safely taking care of her children due to her blindness and her blindness alone. So she didn’t do it and has worked it out other ways. But how sad is that?! I have so many different friends now that are blind parents and do a fantastic job. Their kids are absolutely amazing and in many cases I think are better citizens because of different situations they have experienced and faced due to having a blind parent. I am going to (hopefully) be a parent in a few years and sure, there are a few things that I have wondered about how I am going to do with my vision loss.. but it’s do-able and we don’t need all these people, especially law enforcement, legal personnel, and social services agencies thinking that we are inept solely based on our blindness.

I was already a bit upset and thinking about speaking out about this campaign a few days ago and then when I saw the Today Show segment, I literally became sick to my stomach. Rebecca Alexander has Usher Syndrome, which is a combination of hearing loss and vision loss. The vision loss is caused by Retinitis Pigmentosa, the same condition I had. Her brother is an NBC Correspondent and went on the TV show with her to talk about the #HowEyeSeeIt campaign. Together Rebecca and Peter went to a nice restaurant and attempted to eat a meal. Peter experienced difficulty with drinking out of the glass which had a piece of fruit on top, cutting his meal, figuring out where his food was, etc.. all things that do happen to the visually impaired. However, I will say that we also have methods to help us with this, such as when we place food on our plate we will remember where we put it or when we first get the food if it was served by somebody else, we will ask for a description of where it is on the plate. (I was pretty impressed with the waitress who said that she was bringing something in on his right – that announcement was pretty awesome and most wait staff don’t do that sort of thing, unfortunately). Rebecca is an amazing, beautiful woman who has accomplished a lot, from climbing some of the highest mountains, to some pretty impressive swim times, etc. So for her to say that she has become comfortable with other people cutting her food just completely rubbed me the wrong way. If you can climb a mountain, you can cut your own food. She also said something about wanting to experience everything while she can. I have mixed feelings on this. The way she said it sounded like she had a death sentence.. blindness isn’t deadly. Now if she had said she wants to VISUALLY experience things while she can, I would totally understand that. I have a few “vision bucket list” items of my own. It’s just really sad that two individuals who are very much in the spotlight already went on the Today Show, which has a wide following, promoting these ideas and this campaign. Ugh.

These simulations may somewhat portray what it is like for those who lose their blindness overnight (which can happen) or have sudden vision loss, but for those of us who have been living with vision loss for awhile, it is not accurate. We still can get pretty frustrated, don’t get me wrong, but we develop skills and techniques over time with practice to be able to do the same things we did prior to our vision loss or those with congenital blindness, those that their sighted peers do. For example, putting on make-up can be quite the challenge. Joy Ross has some pretty excellent videos about how she has learned to put on make-up as well as other daily tasks. People who play sports and are visually impaired have had a lot of training and practice to be able to perform at the level they do.

Assistive technology of course helps greatly.. we can go to a restaurant independently (of course after we have figured out transportation), and read the menu with the help of an app on our phone. We can determine what cash we have in our wallet with an app on our phone, the US Treasury money reader, or by folding our cash certain ways for each denomination (very l0w tech yet easy way). We read our mail with the use of a CCTV (closed caption television to enlarge font and change colors/contrast if needed) or with a PEARL camera and OpenBook software which converts printed documents to text and then reads it aloud. We can cook with different adaptive techniques and equipment.

I live alone. I do everything completely independently. The only thing I really need assistance from others for is transportation, but if a friend isn’t around, I can just call an Uber or Lyft. I work a full-time professional job and absolutely love it. I hang out with friends all the time and have a very active social life. I volunteer in the community. I lead several different groups and organizations. I am a huge family person. While blindness does suck sometimes and get frustrating, I don’t need anybody’s pity because of it. I don’t need others fearing blindness because that just only leads to more unemployment of people with visual impairments (it’s already incredibly, disgustingly high), leads more people to think that blind individuals can’t parent, and becomes the reason that blind people have trouble… not the blindness itself. I also don’t need people thinking I’m inspirational because of what I do as a blind person. I am just taking the deck of hands I was dealt and playing the game of life. When people have called me inspirational in the past, I have gently told them this and added that I’m okay with if they think my perspective and positivity is inspirational, but don’t want them thinking me just living is inspirational.

Don’t encourage this ableist campaign. Please don’t donate to the #HowEyeSeeIt initiative. If you make a video, pair up with a blind person and create an uplifting, positive video about how they are living their daily lives. Don’t post a video that shows how frustrating it is to be blind.

Thank you.

 

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. 

Learning to Adjust


 

Makiko, a black labrador retriever, is laying on the floor. The photo is shot from the floor so as to be on the same level as Makiko.
Makiko is exhausted!
 
As you may recall from a previous post, I have been losing a lot of vision lately and struggling with it. However, after I went through that “initial grieving,” I have been doing a lot better.

I’m working with a really great counselor with the Division for Blind Services (DBS). She is helping me figure out a lot of things from the psychosocial aspects to losing my vision, to the adaptive technology necessary to continue with my job, to the tasks that I need to relearn to continue to live independently at home, to figuring out how much vision really I have lost.

I did an Adaptive Technology evaluation on Saturday and learned a lot. I left feeling optimistic but also a little overwhelmed – what of this technology that is recommended will I really use? When will I really use it? How can I use it to its greatest capacity?

My job is unique because I do not have one office that I always work out of. I do have an office but I also serve 13 different high schools that I am constantly at. I have to sit in on ARD meetings and I have to have individual appointments at these schools and I need the technology to be portable and accessible in these environments. We’re working on this! The really cool thing about my counselor at DBS is that she is blind due to RP herself, so I look forward to talking to her to figure out what of this I really will need and how to bet use it.

We’re working on the adjusting to blindness aspect together. I’m getting there. I have a lot of support that makes this so much easier. I have a wonderful guide dog and best friend. She makes all of these obstacles easier. She too is adjusting though to what I can’t see anymore that I could previously and the level of care she has to give now to watching out for things that she might not have had to before. We might be having a follow-up from GDB to help with this transition. We shall see. My boyfriend and my Mom are also huge rocks. Steven is so gracious in helping me navigate social situations. We had two parties this weekend and he really helped me feel comfortable. Of course, he goes off and does his own thing with his friends but he always comes back to see how things are going, and for that I am very grateful. Mom has helped me figure out different organizational systems that I need to start using to be efficient at home. She also takes me all over the metroplex for all of my appointments and helps a ton with everything. Sometimes on Fridays I am just so exhausted from all the work that week, it’s nice to just “go home to Mommy,” and be in a safe environment where I don’t have try quite so hard.

I’m still working on scheduling my Low Vision Evaluation. I’m a little nervous to see what it says, but I already know I’ve lost a lot of vision.. so that helps a bit… but still, seeing the number of how much you DONT see is a little scary sometimes.

I’ll also be having an Independent Living teacher come out to my apartment within the next few weeks to start working on some of the things I’ll have to learn over again with this vision loss, such as how to make sure something’s fully cooked, or how to identify cans or bottles in the refrigerator that I’m not able to before. I’m not really sure what this all entails because I haven’t really done it before. I did have a teacher that came out several years ago for like a few hours but then she never came back for some reason. She did bring me oven mitts that go up most of my arm so I feel safe using the oven and this black/white cutting board.. so if I’m cutting an onion, I would put it on the black side for contrast, as opposed to the white side, but if I was cutting something dark, I would put it on the white side. I still use these ALL the time so I’m looking forward to what other tricks or things they have that could help me.

Also, we are going to work on Orientation and Mobility a little bit. Makiko and I are solid but there are two crossings that we would like an O&M Specialist’s help with to see what other safe ways we can cross the street or what else I need to do to advocate. I am hoping to use my previous O&M, Micha Moore. We’ll see if we can make that happen.

Last, but not least, I am going to make an attempt at Braille. I do not know how often I will use it, or if I will even be able to learn it. However, it is a tool that could potentially go in my toolkit and therefore I want to give it a shot. I do not foresee myself ever using it to read large documents, etc., but just to help find locations of rooms or identify objects, I think it might be useful. I am going through Hadley School for the Blind. It’s an online course.. yes, an online course. I told someone at work about that and they looked at me like I was a little coo coo. I don’t blame them, it does sound a little strange. The way it works is I had to order (free) this equipment through the Talking Book Library that plays these audio cartridges. Hadley School for the Blind sends these cartridges with the lessons along with books that I read, learn, do the assignment and send it back to the instructor. She then grades it and sends me the next lesson. I’m looking forward to seeing how this all goes.

Above all, my boss has been super wonderful. She is the one that reached out to others to figure out what SHE needs to do to help accommodate me and make my job accessible. She is always willing talk when I’m having a particularly bad day and she never acts like accommodating me or helping me is a burden. She is such a wonderful boss and I am so lucky to have her as I go through this transition.

So, we’re adjusting. We’re doing okay, we’re optimistic, and we got this.. just going to be a bit exhausting while we go through all of these evaluations and figure out all what is needed.

Good night. 🙂

Assistive Technology (AT) for Blind Dogs — wait, what?


Animal love. Disability advocate. Those are two things I am known for and very proud of. I have a big heart for helping people with disabilities and animals. So, when I hear heartwarming stories about animals who have disabilities, I absolutely love them. There have been a few posts on the news and various websites over the past few years about a guide dog that leads a blind dog, etc., wheelchairs for dogs, etc., but have you ever wondered what, if any, assistive devices are out there for dogs with visual impairments?

This past weekend, I learned about Muffin’s Halo for Blind Dogs. Here is their link: http://muffinshalo.com

These halos are custom designed to go in front of the dog to prevent them from bumping into other objects and to help safeguard them. It also has “wings” to protect their head and shoulder area. Here are a few pics from their website:

The halo on a very small dog The same halo concept but from a front view Medium sized dog with the white halo secured around the dogs body with wings coming out from the dog's shoulder blades and over the head slightly to protect the head. Then, there is a halo that comes forward from the dog's head to act as a bumper for objects in front of the dog.

Clever, huh?

November 21, 2013: Vocational Rehabilitation


I am very grateful for this little thing called VR (Vocational Rehabilitation) for many reasons. It is both something that has helped me tackle my vision loss and survive/thrive in undergrad and now grad, and it is also something that I have found my calling and passion in. I have mentioned DARS a few times throughout this blog but that is Texas’ Vocational Rehabilitation agency. They help individuals with disabilities gain and maintain employment, by providing them with a wide array of services from job coaching, interview skills, assistive technology, independent living skills, etc. They have helped support me through school and have helped teach me about the various types of assistive technology that can help me be successful at things that are now harder to do with my vision loss. I also have finally found something that I really love, and love going to school for.. and that is such a great feeling. VR does so much good for so many people. Yes, it is still a federal/state agency and is part of the government so there are some loops that still need to be jumped and some bureaucratic stuff to deal with, but it is a great agency and I am lucky to have wonderful people on my side to assist me with everything.

I am very grateful for VR.