A-Z Disability Challenge | J : Just Watch Me

Hello.

I don’t think people will ever understand the importance of this phrase. It is like Nike’s motto, but it’s more straight forward. Whenever you say it that means you already know you’re going to do it, there’s no use of trying to talk you out of it. While the other is telling you to do something, you’re still liable to think about it and see whether or not if you need to do it.

For people with various types of disabilities, this is like embed into their brains. It’s definitely been into my head for what feels like forever. There is nothing like proving people wrong, and I always strive for that opportunity to look at someone and not necessarily say it to their faces, “do not underestimate me.” It’s the most amazing rush, as it’s second to being an adrenaline junkie, which a lot of us will put the two together and that is usually a recipe for both excitement and disaster, but we normally don’t go looking for that other part!

I think a lot of people can learn from people with disabilities, especially if they have a physical disability. We tend to push ourselves harder, because it’s not all about proving others wrong, we’re also trying to prove us wrong too. Our bodies get weaker the older we become because that’s part of life, but sometimes once we realize we’re missing out on something or losing an ability that helps us to do things can help build up our strength within and we try to change it for the better!

Here is something to keep in mind:

There is one thing that I need to speak up about first, we do have our limitations like everybody else. Sometimes those limits need to be tested of course, but it’s all about patience. Nothing you do will come to you overnight. If you’re like me, you’ll be up all night trying to come up other ways to complete something! I do not like to throw in the towel as some people would say but if none of my plans work, there is no shame in letting go. This is a harsh thing to think about, because we as humans hardly ever want to accept defeat, and when it comes to disabled people, it certainly feels like the universe is letting us down. If something is not working out for you, you can either think of it in another perspective or you have to leave it in peace.

When I lost the ability to get myself onto my bed or couch by myself, it was the worst feeling in the world because to me, that was my main thing I could do if I wanted to get out of my floor or room in general. It does continue to hurt (mentally) every once in a while, and in the last few years my parents have been losing their strength in being able to lift me off the floor, and that means I am not able to do anything on the floor like I used to. I don’t like to accept something I can no longer accomplish on my own, but I am able to look at it in a different way, because now that we’ve moved into our new house, I am getting out of my room a lot more because there is so much space between rooms. Being able to move around in my wheelchairs is as good as scooting, plus there’s a lot less pain in my back and hips too!

How are you with proving people wrong with your limited abilities? What is your mindset whenever you cannot do something that you’ve worked so hard to finish?

A-Z Disability Challenge | I : The Real Definition of the Word “Inspiration”

Hello!

Today we will talking about a rather touchy subject, and that is the word “inspiration” when it is used to describe a person with a disability. I’d also like to say a warning before we continue on with the post because I tend to get a little angry with this topic, but only for that it’s super important to show others that because we have disabilities that we do not strive to be an inspiration to anyone. So, I’m hoping you’ll understand where I’m coming from as a person and be able to respect that.

So let’s start with the definition of the word, and I used the first thing that popped up on Google for this.

A person or thing that inspires.”

The synonyms include “influence and muse” and the first things that came to mind after seeing these two words were: art and blogging. An artist can have a muse or multiple of them for he/she to find a sense of creativity that might be lacking for a piece. Now anybody that is using a platform to promote a product is a Influencer, whether they are a blogger or YouTuber, that is the term that’s generally used online. These are real and true ways to describe a person, but it says nothing for people with disabilities, because there isn’t a word for us. We don’t fit in that box and that is the one thing we’re perfectly fine with too!

For us, it’s all about adaptability. We’ve had to find ways to figure out how to do things on our own without any help. If we want to be independent this is what we have to do in order to achieve that way of life.

Unfortunately, it’s usually the little things that gives us the most praise. For me, it was always my art or being able to grab things in various sizes with my feet. When I was in school, I did enjoy the attention I was getting in art class, but once I got into middle school, if you had the talent you were basically taught to seek out perfection, and whenever I couldn’t get there in the same amount of time as my peers, it really hurt me mentally. It actually took about three or four years after I graduated just to feel comfortable to do art again, mostly painting, and I never enjoyed doing that in school so that worked out well!

When it comes to doing things with my feet out in public, it always a depends on my mood, sometimes I don’t care who sees what I can do, but there are also times where I can sense somebody is watching me. Now I don’t mind children or elderly people staring at me or asking questions, but it’s everybody in between that annoys the crap out of me because that’s when I usually hear the word often. As much as I’d like to look at them and say, “I’m not here to inspire or motive you!” I usually give them a nod or smile to them because I know they’re not doing it to hurt my feelings, but when you’ve heard it pretty much your whole life, it’s the least compliment you’d ever want to receive, okay?

So what can you say when you’re standing or watching next to someone who has a disability that you find fascinating? Honestly, there isn’t the perfect solution to this, but my advice is you could smile at them. A simple smile to a person usually makes them happy, so if you notice something a person is doing that’s “inspirational” just give them a smile as a way to say “what you are doing is absolutely amazing!” This will make that person feel so much better, because you’re not focusing all of that unwanted attention on them for something that they had to learn to do at some point in their lives.

I hope you enjoyed this post and take my advice the next time you’re around a person with a disability. Please be respectful to one another, that’s all you really need to do! ūüôā

 

 

A-Z Disability Challenge | H : Asking For Help

Yes, I am going to try to get back to my A-Z Disability Challenge! I have been kicking myself for not doing it for so long but I think I am finally ready to start on it again. If you have missed any of the other letters, I have them at the bottom of this post so you can check them out afterwards.

This week I will be talking about the notion of asking for help. Although it is a fairly popular topic of other disability bloggers and YouTubers out there, I think it’s a good idea to have many pieces out there for people of different generations in multiple point of views to help people learn more about what they should do if they ever found themselves in a situation where they want to help, but are not sure on what to say or do at the time.

I will be firstly talking about why a disabled person will probably never ask for help. It’s honestly a mixture of things, I think the most important reason is because we don’t want to look weak. We actually love doing things for ourselves. Every ounce of independence we get, we relish in it for as long as possible. However, the day it runs out, it is a heartbreaking day. For example, after I had my back surgeries in 2002, I wasn’t able to jump back into my regular physical therapy, we did a lot of moving around and my body wasn’t used to all of that yet. Our main objective for me to learn consisted of how to transfer from wheelchair to couch, chairs and toilet. I finally re-learned how to transfer again two years after I recovered. Unfortunately I never learned how to get on my bed by myself, which was probably the biggest blow out of the whole thing. I can scoot down off, but I do not have the strength to pull myself back up anymore.

If you were raised like me, you basically had full rein on what you could do, and it made you feel “normal” for once. We love to challenge ourselves in our daily lives. and being able to learn something new is the biggest drug we can seek out. Unfortunately, some of these challenges can be more complicated with some of our limited movements. So, we can sometimes be slower than not only we would like, but for other people too. I’ve realized in the recent years is that our families are usually the ones that have the lowest points of patience of the bunch for some odd reason! They don’t like to see us struggling, especially our fathers, so they want to “help” us. What they don’t know is that they’re doing more harm, as it is better for us to learn how to complete a task than leaving it for someone else.

I do understand the reason why people feel like they should help us. Even though you should always ask that person if you can lend a hand, we will try our hardest to make sure to let you know we don’t need you. Something you may not know is that we have a huge sense of pride within ourselves. Giving up on anything that lets us be like everybody else is the worst thing possible ever. So, when we can’t finish what we started, we will reluctantly ask for help. We will not be very happy with ourselves, but at that time it will be something that needed to happen.

I have always had a difficult time accepting help. One thing that I despise is when someone close to me will automatically do something for me, when they know I can clearly do it. I love trying to find new things to do with my feet, nothing really makes more happy in life than discovering new ways to do ordinary tasks around the house or out in public, but it does make people nervous, they think I’m going to get hurt, so they try to dodge that obstacle as fast as they can and yes, it is very annoying but you have to let it go and hope for the next time. You have to realize your patience is not the same as others so in a way, I think both sides need to keep that in mind when it comes to these things. It also ultimately depends on them on if they can learn to grow to trust you with the various tasks you know or learn later in life..

Here are previous letters and their links if you want to check them out now!

Arthrogryposis Multiplex Congenita | Building Trust | Be Truthful To Your Children | Dear Disability Community | Events | Treat Your Friends The Way You’d Want To Be Treated | Long Term Goals

A-Z Disability Challenge | G : Long Term Goals

Howdy!

For today, this post will hopefully be lighthearted; the kind to make you smile with some of the things that I’ve been collecting as part of my long term goals to accomplish in the future. It’ll have the same format as the other post about my goals for 2019, but I’ll explain a little more about each one, so you will understand why they are important to me.

I like to think there’s a big difference between a bucket list and long term goals. In my Pinterest board for my bucket list things, are not very realistic. You’re wishing to do them rather than actively trying to seek them out. Now, I’ve seen a lot of people who make bucket lists and actually cross off certain ones, but not everybody is that lucky. I’ve never thought about having or even listing out my own personal long term goals like this before, but since I wrote out my other top five goals for the year, I figured maybe I’d be lucky and actually push myself a little bit to actually make a dent in my list. I’m hopeful that’s all that matters to me!

When I created this list, I tried to list them in some kind of order, but we all should know that life doesn’t always follow this rule all the time, but at least it’s organized for me to explain each one for you below!

Write A Cookbook 

I’ve always wanted to write a cookbook, between being my dad’s guinea pig for years and the beloved recipes that my nana was taught by her parents, and then papaw’s family, I just feel like this is the next step! What I find interesting is that I have these big plans of writing it and including inventive gadgets that could help other disabled aspiring cooks and/or bakers, but I still have yet to actually do anything in the kitchen.

When I was with my nana, I could convince her to let me help her mix or pour the various things into the bowl, but I can’t even do that with my own parents! Recently, I went out into the kitchen to watch my mom make broccoli and cheese soup and she would not let me do anything. In her defense, she hadn’t made it in a long time so she was basically panicking making sure she had everything and it was all coming together. I was basically there to express my cooking knowledge with her, which that part was fun, but I yearn to actually do something. I’d love nothing more than to make my parents dinner one day, but these two goofballs won’t let me!

Go To The AMC Convention 

In 2012, I found out about the Arthrogryposis Multiplex Congenita Convention. This was also the same year, I found the whole mother-load of fellow AMCers and the fact that we even had an awareness day for us! I was extremely happy because I love to talk to people, especially family members of kids that have various types of disabilities. Parents and guardians are always looking for others that may have experienced similar situations, and I enjoy being a voice to the younger generations to gain some independence and be who they want to be. This was one of the main reasons why I created my blog in the first place!

It wasn’t until 2017, when the AMC group basically announced to everyone where they were going to host the next convention – because they go to a different state every year, so it keeps things interesting for everybody that attends. Well, I usually like to look on their Facebook page on the last day to see where they will be going to, and for 2018 they were going to Louisville, KY. I was happy! I showed it to my mom, who basically told me “if you can talk your dad into it, then maybe.” Now this came out at the end of July, my sister announced to us in October that she was pregnant and that she was possibly due at the beginning of July… So, my nephew was the reason why we basically dropped that idea from ever happening.

I would love to go to the convention one day, which is why I have included it onto this post. I would love to meet other people to see how they’ve managed to do things. I also think it would be a good thing for my family too, because I’m always hoping that they’ll want to help other families, especially my sister, she’s very helpful and I think she’d enjoy meeting the siblings and basically talk to them about her experiences of being the younger sister of someone with such a physical disability. I just think it would be a great experience for all of us!

Speak On A Panel At AbilitiesExpo

A couple of years ago, I heard about the AbilitiesExpo. I know there is one in Chicago and the other is in Los Angeles. I saw a vlog on YouTube of an attendee that jacked a tripod onto the foot pedals of his wheelchair so he didn’t need somebody else holding his camera for him. I was stunned at this, and I immediately showed it to my dad, we’ve been tempted to do something similar to mine. Anyways, I think the expo is very cool! It is usually for three days, and includes small sections of different companies for fashion, wheelchairs, biotechs, etc.

I have had the same recurring dream of speaking on a panel with other wheelchair users, it usually included Tiphany Adams, Jordan Bone, and myself. These ladies are very special to me as they’re always talking about their experiences of becoming a wheelchair user, and what keeps them going and thriving! I think being able to speak to a large crowd with several other fellow disabled ladies would be interesting! We could discuss real topics like sex and relationships, and give people another outlook to women with disabilities. I don’t know if AbilitiesExpo has ever done anything like this, but I thought it would a cool idea to do in the future!

Visit England

I think everyone knows about this one. I actually didn’t have it in the original line-up, I had a totally different goal but I realized that it kind of went with the first one, so I switched it out.

I’ve talked about how much I love England, and yes, most of it goes with the royals, but I have become kind of obsessed with the overall history of the country. I love the cities, London being my favorite! Bath and York are two of my favorite cities that like to show off their impressive structures, from the cathedrals to a row of houses.¬†¬†Recently, I’ve been loving various pictures of the countryside. The villages are beautiful, they’re completely different compared to what I see here in the United States. Buildings and houses that were built in the 1600’s still being used to this day, the architecture is gorgeous! If you’d like to know all of the places I’d like to visit one day, click here.

Have A Baby

For a long time, this was the only long term goal I ever had and as the years go by, it continues to go further down the list.¬†I’ve talked about this in the past, so I’m going to attempt to keep this as short as possible.

Years ago. I did include the words “get married” before it, but I’ve sort of lost my interest in wanting to do that. Even though I have my parents and sister’s marriages to look at for inspiration, marriage as a whole in this day and age doesn’t appeal to me. People make vows and sign a certificate but will cheat on their spouses anyways. I don’t want to say because of my disability, I’d always be faithful, because I am not invincible to anything, especially my own temptations.¬† However, being attached to someone that could be the one to give a child frightens me, because they could always come up with a story that I could be a bad mom, adding to the stereotypical image of people with disabilities can’t bear and raise children.

I’ve always wanted to be a mom. My maternal instincts come out whenever I am around young children. I want to teach them how not to be afraid of someone like me. It is hard sometimes to be around my sister and nephew together, I still get fairly jealous that she has a son to call her own, but I also have to tell myself that I get the easy job as an aunt, but I’ve always wanted to do the things that she does on a daily basis. I have met with other disabled moms out there and they do ease the questions of whether or not, if it’s possible to have a child, but it’s getting to that point where I can fulfill that dream of mine that feels impossible. Hopefully one day it will happen.

Do you have any long term goals? What have you done to try accomplishing them?

Life Lately | Oh, Singing The February Blues!

Howdy!

Yup, it’s me! I’m back to blogging after what feels like forever! February wasn’t a bad month, but it still sucked. I wasn’t my normally peppy, productive self and even though I had a lot of different types of blog posts in my head and in my daily planner, it’s been hard to concentrate to do anything worthwhile.

It seems like for the most part, February was full of sickness. I have over 200+ friends on Facebook and I’m pretty sure, the majority had some sort of illness! I wasn’t sick with the flu, like most people, but I felt really out of it though. I just wanted to sleep, which concerned my parents because they know how I hate taking naps in any part of the day. A part of me thinks it has to do with my depression creeping back to me. I’ve been feeling negative with myself again. I’ve also noticed that I just want to start bawling in both happy and sad times. It’s been really frustrating to figure out which could be wrong with me, because I don’t know what could be different compared to how life was like in October!

When February arrived, I was a little down with myself because I hadn’t used that last week of January to work on the first two weeks of the new month, so I think that was part of the issue in the beginning, but once I started working on my disability challenge posts I was fine! It wasn’t until I started working on my Valentine’s Day stories that I really noticed something different with myself. In January, I wanted to write happy, love stories. I don’t know why I decided to write about breakups instead. I was really mad at myself for not doing better since I had been so excited to begin production on them.

I don’t like putting a lot of pressure on myself. I’m already doing two other series on my blog, plus one more exclusively on my blog’s Facebook profile for this year. I did not need to add a fourth idea this late–and yes, it is considered “late” because I’ve done enough planning! When I came up with these ideas, I gave myself enough time in between so I wouldn’t feel like everything was crushing me to the point where I’d give up on everything! I just decided stop what I was doing for February and wait to publish anything until March begins, so I would have a new month, a new start to get things finished, scheduled and ready for you all to read something different and fun!

For the past few weeks, I’ve been trying to do more self-care things, like reading and watching movies again. I’ve also joined a fun community of baby name euthastists like myself on Facebook, so I’ve been having fun collecting pairings, and adding onto my personal list and “baby names” Pinterest board too! Speaking of Pinterest boards, if you’d like to see what I’ve been watching on TV lately, you can check out my “seen in 2019” mini board now! I’ve been exploring the drama and time period films again, so if you are into historical, tear-jerker type of movies, you’d think you’ve hit the jackpot with my list!

How was your February? Have you or your family been going through the sickness too? Hope you’re all feeling better!

A-Z Disability Challenge | F : Treat Your Friends In The Way You’d Want To Be Treated

I know I’ve said this for almost every post, but for today it is really important. The topic I will be discussing is how you should treat your disabled friends. I wish this was common sense, but I guess for some people, they lack knowing how to act while hanging out with a person with any kind of disability in both private and publicly!

I am purely basing this off of my own experiences I had while I was in school, because this was the time that I saw anybody outside of my family really making the conscious decision to really hang out with me outside of having a sleep over and of course, seeing each other in classes. This was also the point in my life that I realized that I was truly different than my “friends” because whenever I was around them, I made myself forget that I was disabled. I wanted to be like them so badly that I never felt accepted to be myself, so I wanted to write this post for both sides.


I loved birthday parties! I enjoyed getting out of the house and spending time with my friends outside of school. Although, from the ages 7 to about 10, there wasn’t anything too major that we all did together. I never played spin the bottle or seven minutes in heaven like most preteens did. Now whenever I had birthday parties and sleepovers, I was in a more controlled environment and everybody was basically forced to do what I wanted to do. After my 7th birthday and having over 20+ kids, that included a bunch of rowdy boys, came over to our house, I never had boys over ever. So, I never really had the chance to play spin the bottle like I really wanted to!

I think my favorite parties were over at Haley and Zack’s houses. I’ve been friends with both of them for YEARS! I met Haley in kindergarten, she was my first true friend and Zack’s grandparents lived really close to mine, so we’d see each other almost every other weekend. Anyways, I loved going to their parties. Whenever I would go over to Haley’s, we would be indoors, but when I was attending Zack’s, we were mostly outdoors, sitting by the bonfire, or at least I was. Both made sure to include me as best as they could, but there were a lot of things that they were doing that I knew I couldn’t do, so I felt conflicted a lot of the times, but whenever I’d get in that little funk, I’d end up talking to their families. I love both of their mothers, and whenever I see them, we’ll talk and hug each other!

Once we all got into high school, it was almost like, everybody was too uncool to have sleepovers. I had the hardest time finding people that wanted or had the time to sleep over at my house. I rarely slept at anybody’s house other than my friend Haley and with my cousin Kristi. There was a reason for this though, after I had my back surgeries I grew a lot both in height and weight,¬† in a short period of time, and it wasn’t until probably 2008 that I began to feel okay with somebody touching my back again. I was still pretty fragile by the time I hit middle school to the end of junior year of high school. This is why I only hung out at two people’s houses, because only two adults were really comfortable and basically took up the challenge to lift me up stairs, beds, couches, etc.

It wasn’t until the end of high school, were things really started to change. There is nothing like a broken heart, especially when it’s caused by your friends. Boys will come and go, but I think I cried more about not being to hang out with my friends. It was never like I wasn’t allowed to go out because my parents said so, it was the fact that nobody would do it. It wasn’t until my 18th birthday that I actually had a friend of mine, take me out. One person.

So, imagine the disappointment when I was told that I was going to get picked up to go out to eat with some friends and I never got a call or a text that said “they were right outside.” In that moment, I truly hated the body I was born in, because I thought if I wasn’t like this, I could be driving my own car, picking them up, and we’d be happy as clowns. Instead, I sat in my room permanently attached to my mom’s shoulder as the minutes trickled by and I received no messages.

It wasn’t until my mom basically said this is not right and packed us up, she texted my cousin Kristi to see if she wanted to go putt-putting that afternoon. While we were at a stop light, I got a text message from the same person I was supposed to be waiting on, asking if I was there already because they’d seen my mom’s car–still didn’t get the message that they were going to pick me up like they said–so I quickly realized that the whole thing was a big joke and that I got excited for no absolutely fucking reason! I know it’s been over 8 years, but I still feel somewhat hurt about this! Friends should never make you feel like that, ever! I can never literally look forward to anything because of this one outing that never happened. It’s okay though, my mom, sister, Kristi and I had fun at miniature golf anyways!

I do worry about these younger generation of disabled kids and teens, because I know how I was and how I dealt with my pain of never feeling like you are enough for roughly anybody. It wasn’t healthy and I know that now. It wasn’t until 2012, two years after I graduated from high school, that I truly began to really love myself for who I was. I started treating myself better! Unfortunately, I’m still not good at keeping up with my friendships, and it’s probably stemmed from this past experiences and other stuff. That’s why it’s highly important to always remember to treat your friends, whether they are able or disabled, like you would want to be treated.

The End.

Do you have any advice for the younger generations on how to treat other people? Were you ever put in the same situations? How did you make it out? Let me know!

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.¬†