Disability

When I Become Invisible

July 7, 2018

Yesterday, I saw a post on a Facebook group that made me think about the times when I become invisible. This would be an amazing super power to have. Imagine the things you would see or hear. Unfortunately, I’m not talking about a hypothetical situation based in tales of fiction. I’m talking about an all too common occurrence.

Two cartoon people with an invisible person between them.

There are times when I’m out in public when people speak right past me as if I’m not even there. They prefer to speak to whoever I’m with. They probably figure it would be too awkward or they are just assuming that I couldn’t possibly answer a question. These questions aren’t about advanced mathematical concepts or interpreting the latest scientific research. No. They are questions like, what does she want to eat? Does she like this or that? What’s her address, phone number etc? What’s wrong with her? Why does she wear glasses? I could go on, but I’m sure you get the point. Everything they are asking, I would of course know the answers to, so is it really necessary to ask a third person?

Two women shopping.

Many years ago, I went to Cancun for a vacation. While I was there, I had my hair braided. A girl I was with had it done and I thought it looked cool. Anyway, when I came back I got lots of comments and compliments on it. It’s definitely not something you see around here every day. A friend and I stopped at a convenient store and while we were checking out, the cashier asked my friend where I had gotten my hair braided. My friend obviously knew the answer, but she did something I didn’t expect. She said, “I don’t know. Why don’t you ask her.” The woman got quiet for a few seconds and then turned to ask me where I had my hair done. She seemed a little embarrassed and she should’ve been. I’ve never forgotten how my friend responded in that situation. She spoke up for me, but she didn’t speak for me. She let this person know that it’s not okay to speak past me and that I’m perfectly capable of answering questions that are directly about or involving me. I wish more people thought and acted like her.

Mother and daughter at cafe.

Another time, my mom and I were eating lunch at a restaurant. The waitress stopped by and put the drinks on the table. She starts talking to my mom and mentions how she should open the straw for me. I was so shocked and pissed off that that’s all I remember from their conversation, but I snapped at the woman telling her that I can open my own straw. Here is what I don’t understand. How can someone who walks into the restaurant, picks up a menu, orders food and appears to have a normal range of movement not be capable of opening the flimsy wrapper on a damn straw? Do you need 20-20 vision to do that? I’m curious… I’m also curious how this waitress thought I was going to eat.

The waitress didn’t respond to me and quickly left the table. My mom told me how I shouldn’t have snapped at the waitress because she didn’t know. She’s an older woman and she probably doesn’t know any better. She was just trying to be helpful. She told me I should stop getting so irritated with people and just let it go. This is exactly how these situations usually play out. We are just expected to take the treatment given and be gracious even if the treatment is shitty. Oh, they were just trying to help. Oh, they don’t know how to talk to you. Oh, they are scared. Well, they weren’t talking to me. They were talking past me and assuming I can’t do the simplest of tasks. I won’t accept that kind of treatment. Would you? Would you accept that for yourself? Would you accept that for your partner, your friends, or your children?

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Awareness, Education, Parenting

A Butterfly In the Clouds

May 19, 2018

This weekend, my heart is a little heavy because of the events and social media posts I saw yesterday. First, there was another school shooting as most people in the US already know. While I don’t live anywhere near where the shooting happened, I wonder what the future holds. What kind of world do we live in where our kids can’t even be safe going to school? When I was a kid, I never thought of anyone bringing a gun to school. School shootings weren’t heard of. Now it seems as though there’s at least one every month. A friend of mine who grew up in northern Maine where hunting is quite common told me about how people would often have guns in the back of their trucks, but she never feared for her safety. Her peers didn’t play with guns and they certainly never brought them into school to shoot people. I think far too many people have access to guns that they shouldn’t have, but I don’t think that’s the entire issue. In my opinion, we don’t pay enough attention to mental health and more specifically why there are so many mental health issues in our children. We need to get to the root cause if we ever are going to stop this.

I’m not just talking about major mental illnesses. I’m not trying to further stigmatize an entire population of people because not everyone with a mental health diagnosis is violent. What I’m talking about is the disconnect between people and valuing themselves and others. It’s like there is no consideration of life. Other people’s lives don’t matter especially if those lives are different than your own. We need to find out why our children are so depressed. Why do most of us feel so alone when this is the era of connectedness? Of course most of those connections are superficial and I think many of the problems stem from that. Out of all our connections online, how many of them do we talk to on a regular basis? How many of them do we see in person? I’ve read some articles that say that parents spend more time with their children now than ever before, but I don’t see how that could be true. Maybe they spend more time in the same physical space, but it seems the disconnect is more apparent than ever.

I saw a post yesterday on Facebook about one of the local high schools. According to this person’s experience, many of the teens are getting bullied. They get called fat, smelly and unwanted. Some students scream white power in the hallways and from her account an autistic person was pushed down the stairs and that was just bits and pieces of her post. One commenter mentioned that this was happening in high schools everywhere. High school is no picnic for most people, but this is really sad and scary.

There is so much hate out there. I know it has probably always been there, but I’ve never noticed it as much. Maybe it’s because I’m from a relatively small place. Maybe it’s because people never had this many avenues to express it. I don’t know if this is the way people have always been behind closed doors, but I am noticing that people seem to be more comfortable expressing it in public. Social media can be a great thing and I see lots of positivity being spread every day. It’s a great way to find like minded people. Unfortunately, the people that have hate in their hearts can find like minded people as well and there is strength in numbers.

One of my Facebook friends posted An experience she had during her child’s field day activities. She is a blind woman who happened to be interacting with her child and and the group of children she was hanging out with. Some of the children were making negative comments so my friend intervened and encouraged them to say positive things to each other. There’s nothing wrong with that. I wouldn’t like my daughter saying hurtful things to others. Anyway, a couple of the parents had an issue with this and were talking amongst themselves about how blind people should stay at home and stop getting in the middle of everything. One of the mothers said that she couldn’t believe the government gave them money every month and they should stop strutting around. I have paraphrased some of the post, but it was really hateful. If you are interested, you should read it because she actually has a positive spin on it and isn’t letting it get her down.

Is it just me or are people more entitled than ever? Why do they feel the need to get involved in other people’s business when it doesn’t effect them? One example that comes to mind is when a friend of mine worked with people who have intellectual disabilities. Part of her job was to go grocery shopping with them. She asked one of her clients which brand of catsup he wanted. A customer next to them jumped in and asked why she’d bother to ask him because he won’t know the difference. “Why don’t you just get him whatever?” My friend explained that she always asks her clients about their preferences and yes in a lot of cases, they do know the difference.My first thought was, mind your own business! How is it really effecting his day? What does it matter to him what brand of catsup the disabled guy gets? Why does this hateful guy care whether he knows the difference or not? He doesn’t care nor does he want to be educated. He got the urge to be hateful and it made him feel better to treat others badly. He insulted the guy’s intelligence and continued to talk about him as if he wasn’t even there standing in front of him. I wonder how he would feel if he were the one who needed help shopping for groceries. Would he want to be given the choice or would he want everyone to assume he wouldn’t know the difference? This stuff makes me angry and just think, these are the people raising the next generation.

I often see people who are making positive changes in the world. In a lot of ways, things are better than they were in the past, but then you see these seeds of hatred. It moves us two steps backwards every time it springs to the surface. It’s like a stain you can’t get rid of. You wash it until it’s faint, but you always know it’s there. There’s always one tiny speck that won’t disappear. Today Rosebud said, “I’m a butterfly with wings. I jump like this. I jump right up into the clouds.” Doesn’t that sound like a better place to be? A butterfly flying through the clouds?

Butterflies, blooming flowers and clouds.

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Awareness, Self acceptance,

Donations Unwanted

April 22, 2018

It was late in the afternoon. You know, the time of day you start to fall asleep, but if you’re lucky, you get a second wind. If you’re not lucky, you can always get some coffee and hope for the best. So my ex and I decided to walk to Dunkin’ Donuts for ice coffee and a donut as we often did. Everything went as planned. The walk was nice, the traffic wasn’t too crazy and we had ordered our donuts and coffee.

As we walk out of the store, this older man stops us and thrusts a 1 dollar bill in my hand. I had never had this experience so I ask the guy what it was for. He says, “it’s for you.” I said no thank you. I don’t need any money. Keep it.” I said all of this in a nice way. He kept insisting and I kept saying no thank you. After a couple go arounds, I kept the money because he wouldn’t take it back and I didn’t want to cause a scene. I might have given it to someone else to pay it forward, but I was basically out the door.

I felt stunned and didn’t understand why someone would want to give me money like that. I didn’t look like I needed it. I was dressed in nice clothes, I clearly had purchased my food already and I certainly wasn’t looking for a hand out. If you give money to someone who obviously needs and is asking for it, that is your choice and there are different expectations around that, but you don’t go throw money at people just because you pity them. Some people say to just feel grateful because the guy was doing something nice. That’s all well and good, but when someone gives charity out of pity, it’s demeaning.

If the guy was ahead of me in line and paid for my coffee, I would consider that kind because lots of people do that as a way of paying it forward. I have been the recipient of that and have done that for others. It’s not based on pity or obligation. If this man wanted to do something charitable, there are millions of organizations he could donate to. There are tons of places doing research that he could contribute to if he wanted something related to disabilities.

Oh, another thing, what could I get with a dollar now days? You can’t even get a pack of gum or a candy bar for a dollar. If the candy bar is 99 scents, the tax puts it over a dollar so I guess I’d be out of luck. All joking aside, I work, pay my own bills and donate to organizations when I feel the cause is worthy. The sad part is I shouldn’t have to be telling people this. When I come across someone on the street, I don’t automatically assume that they don’t work or that they have a horrible life.

When I was a child, there used to be a blind man that sat in front of the grocery store usually with his accordion. Of course he had a tin cup sitting there for people to put money in. Whenever I’d walk by I’d be embarrassed for him. Everyone knew about this guy and occasionally people would mention him to me. I’d ask myself why he was sitting there basically begging and why he couldn’t get a regular job. I never liked that he was there because if people saw me with my visual impairment, they’d assume I was like him. Eventually he started appearing less and less, but perhaps that older man in Dunkin’ Donuts had that image in mind. The image of someone in need and not capable. I find that some of these assumptions are long-lasting and extremely hard to change even when there is plenty of evidence to the contrary.

I am generally kind to others and am grateful when people are kind in return. I appreciate gifts from those who know me, Curiosity that comes from genuine interest and I will accept help when it is given with kindness and understanding, but I am not and never will be comfortable accepting charity out of pity. I am a person who believes in hard work and caring for myself and others. I am a person not a charitable cause.

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Awareness, Parenting

I Fired My Nurse

March 21, 2018

The inspiration for this post came this afternoon after an experience at the grocery store. I hate grocery shopping with a firey passion for a lot of reasons which mostly involve the people I encounter there. This particular store plays some sort of monopoly where you get tickets every time you shop there. The only way you ever benefit from the game is if you shop there often and collect lots of tickets. Since I only shop there once in a blue moon, I don’t bother playing. My mom was at the store with me and she went ahead of me in the checkout line. The cashiers always ask if you are collecting the tickets when they start ringing up your items so they asked my mom when she was purchasing her items. then when it was my turn, I had mentioned an something I forgot to get so my mom went to get it for me. Meanwhile, the cashier asks me if I’m collecting tickets. I told her no, but within a few seconds, my mom returns. The cashier proceeds to ask her if I’m collecting tickets and of course she got the same answer. You’re probably thinking, what’s the big deal? Maybe she didn’t hear you. Maybe she spaced out. While those things may be true, situations like these happen to me all the time. Situations where people talk around me like I’m not there and questioning my abilities and maybe even my intelligence at times.

Normally when I write in my blog, I only focus on the positive and rarely ever write about something so personal, but I suppose that isn’t exactly authentic. People who know me in real life know that I’m visually impaired, but most people who I interact with online don’t. I usually dread telling people and do whatever I can to hide or minimize it. It’s because I know people will think of me differently once they know. I’m having second thoughts about posting this as I type. Anyway, I left the store today in frustration and I didn’t say anything, but there have been times where I’ve stood up to that.

While I was in the hospital after Rosebud was born, there were mostly wonderful nurses who were caring and supportive. However, there was one who was absolutely horrible. She was rough while drawing blood from my baby, she was abrupt and generally had a negative attitude. It was obvious that I made her uncomfortable and that she didn’t think I could handle caring for my newborn. I’ll mention that I had a c-section due to complications and it was impacting my ability to breastfeed. Sometimes women who have had c-sections take longer to produce milk because of hormones and the trauma to the body. Anyway, for whatever reason, Rosebud wasn’t feeding very well and like a lot of mothers, I was having trouble getting her to latch. Most of the nurses were fine with helping me with this. Rosebud and I were starting to figure it out, but it was taking time.

This nurse would make me feel like crap every time I asked for her help. She’d say things like, “we’re working on independence today.” She kept going on and on about how I needed to get up and do things for myself which I had been. I was up and walking around a couple hours after she was born which the other nurses were surprised about. I would call for help with something and she’d take 20 minutes or more to finally show up. She asked what I did for work. I told her that I worked in childcare. Then she asks if I know how to change a diaper so I told her that I’ve changed hundreds, probably thousands of diapers over the years. She started insisting I needed to get up and change Rosebud’s diaper because we were yet again working on independence. I was under doctors orders that I wasn’t supposed to be moving around too much yet, but I would’ve changed her if she had brought her over to my bed, but instead she changed her across the room. Eventually she told me she wasn’t going to help me with any of the latching problems. that I was on my own. I’m sure there was a lot more that was said. It’s been over two years now and since I was hormonal and sleep deprived, I can’t remember every detail, but I finally lost it. When the supervising nurse came in, I told her that I didn’t want that nurse coming into my room again. I didn’t want her near me or my baby. the charge nurse said that she’d make sure she didn’t bother me again. She told me that the nurse was acting inappropriate and rude and encouraged me to fill out the survey that they send out to all patients which I did.

Parenting is challenging enough without dealing with someone questioning your abilities at every turn. I was confident in my ability to care for her, but breastfeeding was totally new to me. No one in my family had done it so I had little support. They didn’t understand why I wanted to continue with it, but I knew it was good for Rosebud. So when I got home, I started researching and talking to other mothers. Eventually everything worked itself out because of my persistence. And, yes, I did it independently. Everything from the research, to working with Rosebud to fix our feeding issues.

I want other mothers to know that yes, you can fire your nurses. I did not know that and only learned that out of desparation. Also, it’s okay to advocate for yourself. It’s hard and sometimes you don’t know if it’s worth it or not, but it usually is. It’s not okay for people to treat me like that and I wish they wouldn’t, but at times proving people wrong has been a strong motivation for me. It has pushed me hard to achieve my goals. Sometimes it’s okay and absolutely necessary to surround yourself with a protective bubble.

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