A-Z Disability Challenge | E : Events

This was originally supposed to go to a fellow blogger’s site that fall, but by the time I had the time to work on it, she was booked on her blog. So, when I came up with this series, I thought about putting this subject on my blog instead. I hope this post helps with creating or attending your next event.

We all make some type of events with our friends, coworkers, etc all the time. A lot of people love being the person that comes up with the ideas and puts it all together. I will give kudos to anyone that does that job, because I would have a headache going into it. Anyways If you are the one that plans for the entire thing, you usually have it all planned out in your notebook or tablet, just to keep everything organized, you might be missing some things that you wouldn’t necessarily think about needing to know right away.

If you invite somebody that has a disability, whether it’s physical or invisible, you need to cover all areas to fit that person’s needs. Now how do you do that? Well here are some of the basic things you need to remember to do.

  • You need to make sure the place where you will be having the event itself is handicapped accessible.

  • If you’ve invited somebody who is deaf, hire an interpreter.

  • Put things to at eye-level, so that everybody can reach for things easily.

  • Allow them to have their own food brought in, if they can’t have what you’re serving.

  • Brings plastic ware like forks, knifes, spoons, and even multiple straws.

  • Ask the person if they need help, especially if they didn’t bring somebody with them.

  • Make sure they are included in every aspect.

I was going to explain each one of the helpful hints in full, but I thought some were pretty self-explanatory. The first one needs to be discussed is making sure the area is accessible to everybody. For somebody with a disability, we always look out for certain things, like ramps, elevators, and a large bathroom. As a warning, from the moment we get out of our vehicles, we are like hawks, making sure everything is how it should be. You have to be as honest with them as you can as well. If you tell a person with a disability, that the building is accessible, you have to mean everything! If there are stairs, there has to be an elevator. If there is a curb, you have to say “there’s no ramp”. If the bathrooms are tiny as hell, you have to tell them!

Nowadays, lots of people have different food allergies. They might have an allergy to gluten, milk, peanuts, etc and since these are pretty common, a lot of people will respect their wishes and make sure to leave out these foods for that person. However, if you’re on a special diet, and this goes for vegan/vegetarians too, things can be a little bit more difficult for the planner. You want to serve food that everybody will enjoy, but when more than one person cannot have a certain dish, you can’t just change it for them. This is why I included allowing people to bring a small bento box of food that they know they can have to eat, but also I say this for those, who are only allowed to be feed through a tube as well!

To me, this last one just seems mandatory for anybody hosting or planning an event. You need to make sure that everybody in the room is getting attention. Whenever I’d go to events at school, I always felt like I wasn’t included on a lot of things my classmates were doing, and it made me feel really conflicted and sad, because you don’t want to pull somebody or a group of people away but you also don’t want to be lonely at the same time. One thing I do want to say is that, when you do have somebody with a disability at your event, don’t watch them like a hawk. We don’t want your full-on attention, we just want to be included with the rest of the group, so just treat us like in the way you would want to be treated.

Have you ever hosted and/or planned an event before? If you invited a person with a disability, did they explain to you what you needed to look out for to abide by their needs? If you’re disabled, please comment below with some of our helpful hints you think people should know when inviting disabled people to events. 

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A-Z Disability Challenge | D : Dear Disability Community

Howdy!

For today, I am basically writing a letter to the disability community. This post is going to a very strong, opinionated piece. I have been keeping a lot of these thoughts locked up for a long time and I think it’s time to unleash them on here. So you’ve been warned!

I feel like the disability and feminist communities are fairly similar with the way people within it can be quick to judge you if you don’t agree with a certain subject. Everybody thinks we all should have the same feelings about the main topic that both groups discuss, like equality and you role as a human being. I’ve been thinking about the role and where I stand on the various topics that both groups fight for on a daily basis, but I’m mainly targeting disabled people.


I think I’m an army of one. I’ve always thought that, because I was kind of taught that over the years. The only back-up I have is my family and maybe some close family friends, but hardly any of them share the same feelings as me, especially about disability in general, because they’re not in my shoes, or maybe in this case we’ll say “wheels?” It’s not their fault by any means, and I’ve kind of learned to live with it. I’ve become more of a silent advocate for the community. I don’t join a lot of the discussions of bigger topics, like politics. When I was in high school, we were taught how to register to vote and if you already 18, you were allowed to go ahead and do it in class. When I was asked to do it, I said no. There was a lot of backlash for it, one person even told me that I wasn’t allowed to complain if a person you’re rooting for doesn’t win because I didn’t vote. Fast forward to 2016, after seeing the chaos, I don’t think my vote would have mattered because Trump had bewitched the public into letting him into the White House anyways.

The second reason why was because I was afraid of basically breaking rank in my household. My parents are strong Republicans and being somebody, who supports the opposite committee or person, is literally the worse thing you could possibly do. So, I try my best to stay far away from politics at home and even online within my own community. Despite the fact that the majority of the disabled people out there, hate our President as much as I do, there are some very extreme people who will do anything to “stand up” for their rights.

At the start of 2017 I think, I saw a video of a news channel filming people with various disabilities, some of them removing themselves out of their wheelchairs, lying on the ground, and being carried away by security and police officers to jail. I’ve never been in a position to feel like that was my only option, but I was conflicted at the thought of seeing how far people in different circumstances doing anything and everything to plead to people, even making a spectacle of themselves. However, whenever a bill that contains something about disabled people, I am concerned but all I feel like I can do physically is pray.

The next topic I’d like to discuss is about the death of Stephan Hawking. There was a cartoon drawing of Stephan ascending to Heaven, free of his wheelchair, computer, and tubes, and he’s shown walking up the golden stairs to the sky. I thought it was a beautiful drawing, but a lot of wheelchair users were really angry about it. Immediately, there were arguments being made about being in a wheelchair is a form of being “free” and that the drawing just added to the myth that once we die, we’re free of all of our flaws: disabilities included.

Again, this was another thing that I chose to stay out of, because I did not agree with the disabled community on two things. Throughout my childhood, I was told by various family members that when we die, our bodies will be transformed if you will. As I got older, I began to believe this more and have always looked forward to that possibility. And the other was, I don’t believe my wheelchair gives me my freedom. Am I mobile? Yes, but I am not free to move around for a long distance by myself. I feel like I have the most freedom when I’m on the floor. Why? Because there’s more space to spread things out, I don’t need everything right beside me at all times. There are issues with reaching for things that are higher than me, but I always find my way around it.

I know I’m going to be attacked in some form by the words I’ve said in this post, but I still stand by what I believe and that is, we’re not all supposed to have the same feelings and nobody is going to make me convert to their way of thinking, trust me, people have tried their hardest to do this for years! I’ve heard many different sides of these two subjects online, mostly on Twitter and so far, nobody’s said anything to divert me in another direction, the only thing I’ve learned to do is hold my tongue and I’m perfectly fine with doing that for the rest of my life.

How do you stay out of the drama with your family, friends and/or online? Are there topics you do not discuss at all?

A-Z Disability Challenge | B : Building Trust

Howdy!

I created this challenge to talk about disability topics and today’s post will discus about building trust with other people. So, this piece will contain some personal advice and experiences, but it’s more directed to the families of disabled kids and young adults.


Trust is a big thing.

You learn it from a very young age, I think you don’t necessarily realize it until you begin to look back and it does make sense, it all goes together. Here’s an example, whenever a toddler is about to do something he’s not suppose to, you tell him “no” and try to explain that he’ll get hurt. You can’t expect your child to leave it alone, that’s a rarity even in itself, so you’ll most likely see the kid do it anyways and start wailing because it got a bump on the head. First off, kids have to learn things on their own. You hope they’ll get the message and learn to trust you the next time you say something like that, but even you know better not to trust a young child either. So, it goes back and forth quite a bit…

As somebody with a disability, I rely on people to help me with things. I don’t like to, because I always feel like I can figure it out on my own, but there are things that I cannot do by myself so I need help with them. When you have to invite a third party, it can always be a hit or miss. I learned this while I was in school. Whenever my aides were out for a period of time, I had many, many substitutes that would have to be with me throughout the day. I would have to teach them what I needed for each class and what they could do to pass the time. They were kind of dragged from one place to another; not to mention to give your trust on a person you’ve just met once or only had a few times, circumstances would worry me sometimes because I didn’t know what this person would do.

Honestly, I tend to give people the benefit of a doubt. It’s one of the bad things about going with the flow. You don’t want to second guess people right away, so you go all in and give your trust away like it’s pieces of candy. However, I’ve learned over the years to listen to my body about certain things: your gut will tell you when something’s up and mine would flare up a lot while I was in school. I would break down in the middle of classes and feel completely awful, afterwards I would be switched out of that class and I’d calm down and be myself again. Unfortunately, I haven’t had this happen whenever I’m around people, just whenever I’m in a different place physically. I guess that’s better than anything though, right?

For families of disabled kids though, everything is heightened. They’re not there with their child. They have to hope that whoever’s watching over their kid is doing what that person would do for their own children. If something has happened that is a little weird, things can escalate really fast and as someone who has had been in this kind of situation, it feels horrible. You don’t want to get anyone in trouble, but if something is off about how you’re being treated whether it’s physically or emotionally, it is best to speak up about it. You don’t deserve to live in fear of what’s going to happen once the dominoes collapse. They have to give up a lot of their trust to the people their child is around on any given day, and that includes their friends, and that alone can cause a lot of anxiety, but you do continue to take chances because you do want your children to be treated like everybody else, if they don’t, how is your child suppose to live in the real world?

How are you with trusting others around you? And families, what kept you going when things weren’t ideal with your child’s aide or surroundings? Do you have any advice you could to other parents out there?

A-Z Disability Challenge | A : Arthrogryposis Multiplex Congenita

Howdy!

So, last week I basically announced to the world that I was starting my own challenge. I have created this challenge to talk about disability topics in alphabetical order. Some will have a personal touch, like today’s post will discus my condition: Arthrogryposis Multiplex Congenita. The others will be educational and/or opinion pieces. I wanted to give you a good mixture of different themes that everybody, whether you have a disability or not, would understand a little better.


Honestly, I just wanted to write this for people who are really curious about my condition, and who are maybe a little embarrassed or shy to ask me questions up front. This will hopefully help you understand a little more about what it is, what areas it affects, and some of the stuff I’ve had to learn to do, to adapt to my surroundings.

Arthrogryposis Multiplex Congenita is simply as a joint condition that can affect many areas of the body, but it is formed in the womb. Since my joints of my arms and legs are limited to movement, the muscles never really developed, thus why they are really skinny. My arms have always been bent at the elbow, I’ve had many therapy sessions to help lessen the tension in my arms. My elbows will never unlock and I’m okay with that. I’ve always had insecurities with the fact that my hands just lie there. I was never able to use my fingers, but there are a lot of people and young kids whose hands like mine and they can actually write and draw with them. I don’t know what actually possessed me to use my feet, but it was definitely a day to remember for my parents that’s for sure!

I am not able to walk like everybody else. I have two very different feet, and neither one are able to lay flat on the ground, so whenever I did experiment with walking, I usually walked on my tippy toes instead. I grew up rolling and eventually scooting around on my bottom. The only way I can explain for the rolling is because since I wasn’t able to move my arms on my own to get them out of the way, I think my family was afraid I’d get rug burn, so I just started rolling around. Thankfully, I was so small that I could fit through most doors and hallways. I can’t give you a definite age when I switched to scooting but it had been before I was four years old, because I was going to a special school and honestly I needed a better way to get around. I was pretty slow, but I didn’t care one bit. I use to chase my sister and cousins around my grandparent’s house all the time! Of course, for long distances, I was usually carried around but when I was four years of age, I got my first wheelchair and then the roles were reversed and everybody had to chase me!

As I continue to get older, I am in more and more pain. The majority of it is around my back, but the rest of it is in my hips and knees. I was very active as a child, but as an adult, I’m a pretty-stay-in-one-place for a long time. I can sit in the same position for close to three hours and power through the pain in the sides of my hips in order to get work done. Don’t worry, I was not in any pain while writing this post! I feel like I should be considered lucky with the pain in my knees, because I have family members with different types of arthritis, so I always know it could be worse. My nana goes old school and just rubs Vicks on the affected area, I’ve tried talking to my mom about going that route but I agree with her of the overwhelming smell, so I take painkillers to ease the pain away.

If you have any other questions, I will be doing a Q&A later on in the challenge, so just leave your questions below if you’re curious about anything.