The Blind Date

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The Blind Date

🦮 A blind lady talking with disabled people
📧 [email protected]

04/07/2024

San Jose CA (3/3) “I think it’s a very difficult but good lesson that we, as people with chronic illness, can’t hold on to these diagnoses too hard. Because our health is dynamic, and things change, research changes, and there’s always more information coming. So it’s okay to know I’m sick, and I can hold on to the fact that I’m sick. But basing my identity on a diagnosis is not the right move.

What I truly need is comprehension. Comprehension is the first step, and then the empathy and the support is the second step. If there’s no comprehension, then just throw it all away.

I have this huge discrepancy between my desire to do things and my capability. I thought that I had come up with an okay vision of what my life could be now. But I have to keep resetting that bar lower because of what I’m capable of doing, and that is heartbreaking. And that’s just because of what my body is capable of doing, what my brain is capable of doing.

If I could go back, I wouldn’t go back the same way because I would never want to give up what I have learned and gained. The way I connect with people, the way I share, that is such a gem. That is such a gift. If I suddenly had my health, I would want to use what I have learned and find ways to incorporate that into a career that really supports those who need support.” Cathy

04/07/2024

San Jose CA (2/3) “You’re suddenly on a mission. And when you’re sick, going on a mission isn’t easy. So everything became so much harder. And it’s a transition from being a normie to suddenly being someone who’s chronically ill. I wasn’t ready for it. No one is ever ready for it.   I didn’t have any community at the time. I was always active on social media, but everyone I knew on social media was my existing friend group or celebrities. So I created an anonymous account where I looked for people who had chronic illness or where I could share information about myself being sick. And that was the first step in creating community for myself during that time. And it eventually became my main account because the illness took over my life and became my identity, as much as you don’t want it to.    I had to embrace it. And I had to embrace the loss of my career. I had to embrace the change in my mobility and my lifestyle. And it was easiest to do that in the new forum that I created, in the new community I created.

I spent about a year undiagnosed, and I went to a rheumatologist at one point who said to me, ‘I don’t know why you’re here,’ which was the first person to really gaslight me and be rude to me. So I thought rheumatology was cleared and I didn’t need to go back. But I went to an allergist who said, ‘I think we should give rheumatology a second chance.’ And he got me into a rheumatologist that he really liked. And when I got there, she diagnosed me with fibromyalgia, which she ended up taking away once she did the in person exam because this was during COVID. Then she diagnosed me with Chronic Fatigue Syndrome or Myalgic Encephalomyelitis. And she referred me to Stanford’s Myalgic Encephalomyelitis/ Chronic Fatigue Initiative.

And, on a completely different path, I also have a diagnosis of multiple sclerosis. And those are not comorbidities. It’s really unusual. I’ve had migraines all this time, so it’s very normal to be seeing a neurologist for your migraines. And my migraines were very bad, so my neurologist was like, ‘you know what? Let’s get you an MRI.’ And when they did that, they saw lesions in my brain.” Cathy

04/07/2024

San Jose CA (1/3) “I look healthier than I am. And I think this is true for a lot of people with chronic illness. That we seem like we’re a lot healthier than we are. But I fade very quickly.

I am not someone with a congenital illness. I lived my life pretty normally up until my mid-thirties. I didn’t feel well in my twenties, and I got diagnosed with Crohn’s. But I kind of think of that as a blip because I have had my Crohn’s in remission for most of my life.
  So I got into my thirties as a pretty healthy adult, with a really thriving career. And then I, I’m not sure what age it was, maybe like thirty five. I just suddenly became very ill, and everything kind of got flipped upside down for me.

I tried to continue working and just living my life, and it just suddenly became too much. I had to go out on a medical leave. And that was the tipping point where everything changed for me.” Cathy

08/06/2024

Dallas TX (2/3) “I just want people to understand that being blind doesn’t mean helpless, that we are capable and willing to be a part of the society and to continue doing great things to change history. And to make history.” Kylie

08/06/2024

Dallas TX (1/3) “I was born with Lebers Congenital Amaurosis. So, basically, my retinas and cones and rods don’t work right. So I’ve been blind since birth, and I don’t know anything different. So my life has been pretty predictable. I wanna say stable as far as like, I didn’t have to go through any changes with my vision like some people do. I didn’t have to learn how to be blind. I know that sounds funny.

I grew up learning how to read Braille, and it was tough at first because I wanted to be like the other kids and read print. But once I realized, okay, reading Braille is pretty cool. I did it, and I’ve learned throughout my years to embrace the disability instead of hiding it. I used to want to hide my cane. And even through middle school, because people were mean, I would hide it. I just didn’t want to be blind. Until I got to high school and up into college, when I was like, okay. I have a good, strong group of friends who aren’t gonna judge me for this. That’s when I realized it’s okay to be blind. It’s okay to be me.

And then I realized, oh my gosh. It’s almost time for me to apply to get a guide dog. And that’s what really opened my eyes. I needed to embrace who I am so that I can get this dog. And through getting Dasher, he helped me embrace that.

I learned to ask for help. I learned to branch out and be who I am. And Dasher gave me that freedom. That is so cool. It is so beautiful, and I I cannot thank that dog enough.

I didn’t really have a sense of community until I got Dasher at The Seeing Eye and then it’s like, wow. Where have all these people been all my life? It’s been so sweet to meet other people who’ve had similar experiences, who have the same disorder I do. That’s really cool when you meet someone who has the same disorder and you can relate. There’s even somebody who has the same exact gene mutation as me.” Kylie

03/06/2024

Bridgman MI (3/3) “Duffy is short and stocky. I call him a tank. But he’s so gentle. He’s the first dog I’ve had that I’ve truly felt comfortable on steps. They are my nemesis. Because I can’t see how many are there or how far down I need to go. He takes his time. He takes his time, and he’ll even stop sometimes mid-flight and check back to see if I’m still there.

He’s a real cautious dog. He doesn’t like little pebbles on the sidewalk, so that creates some issues sometimes. He also doesn’t like mud puddles. He’s very dramatic. He’ll go three, four feet away from them. I get up at people’s porches to get away from a puddle.

Have you ever heard of slipper feet? He has them. When we walk inside, it sounds like he’s this old man shuffling with slippers on. I think he should have a pipe with a smoking jacket. He looks very distinguished when he’s looking at you. Like, his eyes aren’t quite all the way open. It’s like ‘you can be this much of my sight at this point.’  
I went to a technical center where you learn how to deal with being blind after you lose your eyesight. I had classes. We lived in a dorm, and I learned how to do everything blind.   You had class time, you had breakfast, lunch time, you had dinner time. You had many classes in a day that you had to take. There were some that you could test out of if you didn’t feel you needed them. Which I did do. I had to make two meals, a breakfast and a dinner and from scratch, and I did both of those and tested out that day. 
We went skydiving as a class. I’m a bit of a daredevil. And I thought, well, what the hell? I can’t see how far the ground is anyway. It was exhilarating. I wanted to go right back up. I wanted to go right back up again. And I and in fact, when we were checking out, I bought two gift certificates. 
When you’re free falling, it’s so loud. And the wind, I mean, your skin and just your hair and everything, it’s just pushed back so hard. But then once he pulled the chute, it’s the most peaceful, quiet. It’s so fun. I would recommend anybody doing it. I just, I loved it so much.” Laura

03/06/2024

Bridgman MI (2/3) “I had a lot to deal with when I lost my sight because I lost my sight in July of 2007, and got diagnosed with cancer in August of 2007. So there was a lot of upheaval at that time. And I’m still fighting the cancer thing. I’ll always have to fight that unless they come up with some cure. So I think I have a double thing going on here, and they don’t list cancer as a disability. However, it does disable a lot of what I want to do at times. It depends if I’m in treatment or not. Because that’s just an ongoing thing. I get tired real easy. So if I know something big is coming up, I try to really take care of myself. I’m talking energy wise. I really try to take care of myself to reserve some energy for whatever that may be.

My life since losing my eyesight is a lot smaller. I think that’s the biggest change because I was working before. I had a group of friends. I had my partner at that time, and now I don’t have any of that. My life is small. I think that’s the biggest thing. I’ve adapted fairly well with losing my sight. I I’m the type of person that’s like, okay, this happened. What do I need to do to get along the best I can? And I’ve been that way all my life. I’m sure that came from the way I grew up. It constantly served me well. Although that wasn’t fun the way I grew up, it served me very well for when I did lose my eyesight.” Laura

03/06/2024

Bridgman MI (1/3) “I had West Nile virus, Epstein Barr meningitis, and encephalitis all at once. They believe those viruses attacked my optic nerves and just fried them, basically, along with the myelin. Myelin is an insulation that’s on your nerve endings. So I have a hard time regulating cold and hot. I can overheat real easy and pass out. And I get really, really cool super easy. I don’t have that balance in my body.
 I was in rough shape. I had to prepare my funeral. I had two kids. One had just graduated high school. And the other had just been out two years. He was leaving for basic training to go in the army. And he said ‘mom, I won’t go. I won’t go.’ I’m like ‘no. You go. If this is the end of mine, that’s okay, but you still need to live your life. Go live your life.’ 
That part was hard. And not being with my kids was hard. That probably was the hardest thing. And, you know, at that time, I had a partner, and we were together for almost twenty years, just shy of twenty years when she just finally said ‘this isn’t the life I want.’ Okay. Well, this isn’t the life I wanted.   I have to prove that I’m still blind every six months for my food benefit and every year for my disability. It’s nonstop. I don’t get a break from that. It’s very draining to me. And in all honesty, when I get those letters in the mail from the Department of Health and Human Services, I literally tense up. It’s like, oh, gosh. What do they want now? What are they telling me not to do now? You know, it’s constant. 
In this country, people criticize people who are on a food benefit, which I am. You are looked down upon. Even though I paid into that system all my working life up until I was 43 years old. I started working when I was 13. I started putting in at 13. So for 30 years, I put into this system.    You’re still a less-than citizen. And I will get comments. I remember a couple of Easters ago, my grandkids were coming. I got candy for them for their Easter baskets, and someone behind me made a snide remark saying, ‘oh, I’m glad taxpayers can pay for you to buy candy.’” Laura

15/05/2024

Monrovia, Liberia (2/2) “Embrace yourself. It’s not something that’s always easy I would say but I encourage you to embrace yourself. If you embrace yourself, you will always love yourself. There’s nothing that people can do that will make you break down. There’s nothing to be ashamed of. Yes it is true: I cannot do everything the same as people with two arms but I can still appreciate myself.

I recommend going to school because if you are educated you can break barriers. You can go places. People can look up to you.” Princess

14/05/2024

Monrovia, Liberia (1/2) “I was born with a disability. Living with a disability and seeing your friends around you, it wasn’t easy for me. When I started to grow up, I was ashamed. Sometimes my friends used to bully me. Going to school was so bad for me. I used to hide myself. When kids went outside for lunch I would hide. One of my instructors noticed and asked me ‘what are you doing? You are a unique person.’

When I entered junior high, I started participating, I started doing presentations and running for positions. When I reached university, I was so exposed. There were people who really really knew me. It was amazing. There’s no way of me being ashamed of myself again because, through my church I joined choir, I joined teams. In my university I took leadership roles. I want to be a motivation to others. Right now I’m doing my masters. People see me as normal. I’ve been a source of encouragement to people.” Princess

12/04/2024

Burnaby BC (5/5) “My mantra is: Just keep swimming.

I was born three months premature, which caused Retinopathy of Prematurity. So it’s really it affects your retinas. Three months early is a lot. Typically, what happens is when you’re in incubators, as preemies, you get too much oxygen either through the incubator. Or it’s really common to get blood transfusions, but they use adult blood, which has more oxygen in it than baby’s blood. So in one of those two ways, too much oxygen got to the back of my eye and detached my retina in my left eye, and they didn’t catch it in time. So I’ve always been fully blind in the left eye.

And then with the right eye, I was low vision, before. So, like, horrible depth perception, very light sensitive, and I couldn’t read regular print. It had to be large print. But I didn’t need a cane or a Kiki or any of the talking Voice Over stuff.

But then it’s very common with eye condition to have to lose your vision
later on. So I lost the remaining vision in my right eye when I was fifteen, due to retinal detachment.

I’ve had different issues forming from all of that. The most recent issues are that when there’s no stimulation to the eye, the muscles of your eye and around your eye will start to atrophy, start to shrink. I can feel it, which is kinda creepy and not a fun feeling. It feels like you have a really big black eye from how tender it feels. And there’s nothing they can do for that.

And then the other issue that’s arisen is called calcium buildup. It looks white and cloudy. It looks like cataracts, but it’s not. it’s layers of calcium that build up that eventually, once it builds up enough, will start to push on different parts of my eye. It feels like you constantly have something stuck in your eye. So my eyes, there’s always something happening with them.

I’m very much a ‘you make the best of it’ kind of person and I’m really proud of what I’ve accomplished. My mom always told me, ‘no expectations, no disappointments.’ I really live by that, especially with all the eye stuff.

Just keep swimming.” Jillian

11/04/2024

Burnaby BC (4/5) “When I first started taking Kiki to the pool when we got home from training, I thought a pop up crate might be better on pool decks so that she’d be tucked out of the way. People might not see her as much and might not want to interact with her as much. It might have been because Kiki couldn’t quite see me as well through the crate, but one of my tappers for swimming told me I should get out of the pool and check on Kiki.

I guess Kiki was upset that she couldn’t see me, and she had barrel rolled herself across the pool deck in this pop up crate to get closer to my lane. I was shocked, impressed, and it was the most funny thing I’ve ever seen.

The access issues I’ve had have been with Uber. With my swim practice, I have to be on the pool deck for 6 AM. Which means I have to leave my house by five. At that time of the day, the buses aren’t quite running yet. And then on top of that, it’s like a two hour bus ride from my house to the pool. So I don’t have a choice but to take Uber, which is fine, but except for the fact of all the dog denial issues. I’ve had to really advocate.” Jillian

09/04/2024

Burnaby BC (3/5) “I decided to get a dog when I was 23. There was one situation that made me say ‘ I’m done with this stupid cane, I want a dog.’ I was on my way to swim practice, and there was this sign that someone had ripped out of the ground, and my cane got stuck in a stupid hole. So I took a step forward to try and pull it out, and then I stepped in the hole and fell really hard and sprained my ankle. It made me say ‘I’m done. I’m done with the stupid thing.’ Thankfully, I was really close to home so I could just pathetically limp back. I definitely didn’t make the practice.

I’ve also got a hard time in veering. Especially crossing streets, I found that I veered a lot. I would go towards the waiting vehicles, not the moving ones, thank god.

And then I got a little Kiki over here. So, Kiki’s a purebred Black Lab. She has really pretty big amber eyes. She’s just so cute. I might be a little biased, but she’s such a chill dog. She’s never been super sneaky. She’s never really tried to counter surf. She’s so easy to work with.” Jillian

08/04/2024

Burnaby BC (2/5) “Most of the program was accessible. They really try and design the program to kind of represent the industry to the best that they can in an eight month course. We did a lot of group work. So the parts of our project that might not have been the most accessible, my groupmates could take on. Which was, I mean, it’s good because we got the project done, but also, like, there just wasn’t enough time to find the more accessible ways to do certain things like that.
 I had one prof, shewas such a happy, positive, bubbly person. She made you excited to be there, and you wanted to learn. And she was really great about helping me find ways to adapt the assignments if they weren’t accessible.  
One of my last projects for her course was to do different design mock ups of a magazine. But I’m like, oh, magazines are all pictures.
 So instead of having to do the magazine project, I made a tactile book. I chose Clifford the Big Red Dog because who doesn’t love Clifford? And we went to a fabric store and found different materials and fabrics to use for the different parts of the book. We added in audio elements through a Pen Friend. Which is not the point of a Pen Friend but it worked really well. And, we did embossing, so we had raised, tactile print. It was the quirkiest book I think I’ve ever seen in my life, it was so fun. We found this really fuzzy, red fabric for Clifford. And when we cut out the shapes to make Clifford, it looked like we murdered Elmo because there was red stuff everywhere.” Jillian

07/04/2024

Burnaby BC (1/5) “I’m about to finish my master’s degree. I’m so excited. It’s in book publishing.
 My thesis is examining the publishing industry through a disabled employee’s perspective. I did an internship last summer based out of a literary agency in Toronto. It was a really great company to work for. They were very willing to help with any accommodations I needed, finding ways to make things accessible because they weren’t, which was a major issue. It’s relatively safe to say the software that is generally used in the industry is not compatible with Voice Over or screen reading software, really. So based off of my internship experience, I delved a little deeper into the industry and especially the accessible publishing sector of the industry. I looked to see, for example, do you have employees with disabilities to you know, what are their roles? Are are they stuck in the roles that are kind of based off a perception of their disability? And I gave a little case study of my internship and my experience and what we can do moving forward in the industry to try to be a little more inclusive and accessible.  The content, the books themselves, their formats are accessible. But the way about making them accessible is not very accessible.” Jillian

02/04/2024

San Francisco Bay Area (4/4) “I think I can understand people’s neurodivergence. I volunteer at a nature centre and two boys with autism showed up. One of them was all over the place and I was asking the dad ‘is he on the spectrum?’ He said ‘yes.’ So I said ‘I understand, I understand how you feel because I’m also on the spectrum.’ And so I was able to be patient with them and, like, and have this conversation with them. Even though Junebug was on duty, iI took off her harness and let the boys pet her. And they were talking to her, singing to her on the floor at the nature centre.” Emily

01/04/2024

San Francisco Bay Area CA (3/4) “Growing up, it was hard for me to make friends because I was abnormally different. People would treat me differently. I just wanted to be included in things, like activities, and I just wanted to be friends with these people. The hardest point of my life being neurodivergent was when I was in high school. When I was a freshman in high school I liked dogs, puppies, nature stuff. And then I got an addiction to going to Disneyland and being obsessed with Disneyland.

I just wanted to bring up a conversation starter for people in my high school, and it worked. They loved Disney.” Emily

31/03/2024

San Francisco Bay Area CA (2/4) “Before I got Junebug, I was dealing with stairs and hills on campus. I was so freaked out of walking down the stairs because of my poor, awful depth perception. But with June, she just reassured me that I was able to walk down the stairs with her guidance.

Growing up, I was almost hit by many cars because I had poor depth perception. I don’t realize how close I am to an object. I’d see them as extra far. Junebug keeps me from getting hit.

Growing up, I thought it was normal for people to walk with their head down looking at the ground. until I went to The Seeing Eye and the instructor told me that when people walk, they have to look up with their heads. The reason I walked with my head down for most of my entire life is because I was worried about tripping over things or falling on branches or sidewalks.” Emily

30/03/2024

San Francisco Bay Area CA (1/4) “I’m neurodivergent and I was born with a birth defect within the eyes and the brain. Basically, I was born with it, but over the years I saw so many doctors. They couldn’t figure out why I couldn’t see until I was able to express how I felt.

It’s hard to explain it. It’s hard for me to express things. And so I didn’t tell people that the reason I had trouble and didn’t like reading was because I just couldn’t see. I couldn’t see through my eyes or I couldn’t play sports because I couldn’t see.

It’s like a computer. My lens is totally fine, which represent my eyes, but the computer part has a hard time understanding what I’m seeing through the lens. Like, for example, if your computer doesn’t work, it’s probably the inside, not the outside.” Emily

22/03/2024

Boston MA (6/6) “I work at a school part time. The kids I work with are non-verbal. I love it. I am able to connect really well with the kids. One of them absolutely loves Junie and he gets to pet her after he completes certain tasks.

I Junie has her spot in the classroom where she hangs out. I unclip her harness handle so that the body of her harness is still on her. This gives her the signal that she is semi on duty but not fully on duty. So she doesn’t have to be completely on her game but she knows she can’t go crazy like when she’s off duty.” Joicee

21/03/2024

Boston MA (5/6) “In high school I had a friend and she was hearing impaired. We had a couple classes together, so we would help each other out. Somehow, I could tell. I don’t know how, but I just knew when she couldn’t hear something, when she missed something. I don’t know how, but I just knew. And I would just repeat it back to her. She would automatically go ahead and describe anything on the whiteboard or if there’s like, a movie going on, describe it for me. We had each other’s back. It was perfect. It was like, we make up one whole person together.” Joicee

20/03/2024

Boston MA (4/6) “I had a really good teacher when I was in high school. She was very accommodating, to the point where she went above and beyond. She anticipated my needs and adapted things without me having to remind her.

And then I’ve had teachers who did not accept the fact that I was blind.    On my 16th birthday, I walked into this teacher’s class and he was like ‘oh, you’re sixteen!’ Because they announce birthdays on the loud speaker. He was then like ‘are you gonna go get your driver’s permit?’ And I was like ‘I don’t think they want me on the road. I can’t see.’ And the whole class lost it. He just sat there, mouth open, like, what the heck? And I’d had this teacher for five months.” Joicee

19/03/2024

Boston MA (3/6) “I’m an undergraduate in psychology. I’m going to get a bachelor’s of arts, and I’m hoping to get a master’s in social work afterwards. I either want to do hospital or school social work.

I currently work at a hospital and at a school. At the hospital, I work in in the city of Boston, so it’s kind of chaos. I’m a coordinator in the emergency department, so I have a lot of things that I could be doing from day to day. It’s a big emergency apartment with, I think it’s seven units. We get rotated around based on who does what best or for switching it up sometimes so it doesn’t get boring.

Depending on where you are, the responsibilities vary. In the most high stakes situations, it’s ordering blood or calling the trauma team. It’s a mix of reception and also being part of the unit’s workflow. So getting supplies, making sure rooms get cleaned, stuff like that.

I feel like my vision hasn’t really impacted my job, but it did impact my job search. I had an issue with another hospital I applied to. They had problems with me having a guide dog. And then this hospital was like ‘yeah, we have no issue with that.’ As it should be.

They’ve been awesome.” Joicee

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