Build one another up instead of tearing them down

The disability community over the last few days has been “attacked” by one of their own. This person decided that it was perfectly okay to call another person a disgusting human being because their wheelchair was dirty.

First of all, the cleanliness of one persons wheelchair or room or car, is no one’s business. Second, as a fellow disabled person, you should recognize how difficult it is to take care yourself and have others take care of you. The cleanliness of ones wheelchair does not have any effect on the value of the person. Not everyone is lucky enough to have someone to take the best possible care of them.

As the able bodied person in our relationship, I make sure to give the best care that I can give. I give Charlie nothing less than 100%. Keeping his wheelchair sparkling clean is the least of my concerns but when it is dirty, mostly from crumbs from eating out, I’ll wipe the crumbs off before folding the chair before putting it in the car. But if anyone saw what the Velcro on his AFO’s, they would cringe (I know I do) but they are almost impossible to keep clean. But I do my best. As do others that are taking care of people.

Calling out American Airlines

Recently American Airlines has said that will be banning power wheelchairs on their flights because of their weight; certain planes the weight limit for the chairs is 300 pounds and others it is 400 pounds. I have seen discrimination before and this is by far one of the most disgusting for of discrimination that I have seen. It is 2020, and the disabled community is still one of the most discriminated against communities. The world is not made for people with disabilities.

This ban is a disgusting display of abelism. An airline is not going to come out and say “we are banning white people,” or “we are banning black people” or why is it okay that they are essentially banning an entire community. There are some people that solely rely on power chairs every single day of their life, and they do not have another way of getting around or being independent. The way I look at it with the so called excuse of weight limit, what is the difference between saying that they are banning power chairs and them banning fat people who weight over 300 or 400 pounds. (and I am not trying to say that they should do that instead, I am not trying to say anything bad about fat people at all, or over weight people, whatever term they prefer to call themselves.)

The flying experience is already a traumatic enough experience for anyone with an type of disability. From personal experience it can be a very violating experience, personally my spine is fused for T2 to L3 and obviously it shows up on the body scan during the security check. The last time that I went through airport security I ad to be completely pat down my entire torso because of this. Charlie uses his manual chair at the airport, mind you that the two of us have not flown anywhere together yet, but from what he has told me, he gets pat down on every part of his body, and his AFO braces get swabbed down.

Airlines are also not always equipped to handle power chairs to begin with, I have heard horror stories by people that I follow online. Their chairs get destroyed and broken or pieces go missing. Also people that rely solely on their power chairs, already need to be out of their chair and they need to sit in the plane chairs which can be extremely uncomfortable and sometimes impossible for them without the use of pillows or even adaptive seats such as children’s car seats. 

I have been beyond disgusted and angered by American Airlines an this ban. It really shows how disabled people rank in the world. Whether you want to believe it or not, there is systematic ranking of people in the world, we all know that straight white able bodied men are on the top of that ranking and it goes on from their. The disabled community is one of the most marginalized communities because of the way some people look at them, there are people that look at disabled people and just see them as a burden and nothing more than that. But this is a whole other topic that I can definitely get into on another day.

M

An Open Letter to Cerebral Palsy

Dear Cerebral Palsy,

For 26 years you have given me a rollercoaster ride on this journey we call life, from being three months premature, to graduating college to finding the girl of my dreams. Believe or not I think having CP has made me the person I am today. 

I don’t remember when I was diagnosed with CP but it changed my life and effects me everyday, from needing help getting dressed, to showering, each day has its challenges. When you have a disability, always try and have a positive attitude and believe that nothing can stop you. Overtime I’ve become more independent from doing most of my dressing with little assistance to learning how to put on jackets mostly by myself. Another piece of advice I would give is always push for independence and do what you know you can do. 

There are days when I feel like giving up, but I know there are always brighter days ahead. CP may slow me down but it can’t take away my love for life. It wasn’t until college that I opened up and got out of my comfort zone. College was the first time I didn’t have an aide with me so I had to ask people for help. It ended up being the best four years of my life, CP and all. I went to football games, went on trips, anchored countless hours of radio broadcasts for my college’s sports teams. A disability will only stop you if you let them, you are in control. 

Now to my favorite part, talking about my favorite person. As I said before people always asked me: how do you put yourself out there? In college everyone I liked was taken or they just wanted to be friends. I ended up on being on way too many dating apps and was convinced my CP made me undateable. That was until Hinge and coming across a beautiful girl who I knew I would do everything to keep. My CP was never a big deal to Margaret and she recently told me “you are so much more then your diagnosis.” Each day we take on everything together and often forget I have CP. I’m blessed to say at 26 I’ve found what people look for their whole lives. To anyone who feels like their disability has made them undateable, don’t give up, there is someone out there for everyone.

Cerebral Palsy will be with me for the rest of my life, and it is up to me to decide how much I will let it effect me. I am blessed with an amazing support system, who are always there through minor and major things. 

To those reading this, if you take away one thing, let it be this: always continue going forward, never stay in one spot, otherwise your disability wins. Put yourself out there, otherwise your disability wins. Swipe right or match with that guy or girl you think is cute, it could be the best thing that ever happens to you, otherwise your disability wins. Never ever give up even when you feel like you have hit your lowest point, otherwise your disability wins. 

Love, 
Charlie


Loving Someone with Cerebral Palsy

So here I am sitting in my bed watching videos on my phone and texting Charlie(what else is new haha). He sent me a link to an article and said “THIS IS YOU.” The article was from the mighty.com and it was titled “What It Means to Love Someone with Cerebral Palsy” which was written by a girl named Ashley Burnside back in February of 2017. “The Mighty” is a website that has created a community of support for people who are facing health challenges as well as the people in their lives. They are partnered with companies such as the American Foundation for Suicide Prevention, National Down Syndrome Society, The Ehlers Danlos Society, National Organization for Rare Disorders, National Alliance for Caregiving and of course the Cerebral Palsy Foundation.

Not going to lie, when I first opened the article I thought it was going to be some sappy article from a mom of a child with Cerebral Palsy and how their child is their little hero. But to my surprise, the article was not that at all. It was a young girl that wrote it like I mentioned before. She started with a childhood memory about knowing at the age of four that according to society, people with disabilities are not likely to get a fairytale ending. She was convinced that her disability would always hold her back.

She says “Loving someone with cerebral palsy does not mean you overlook their limitations. It does not mean you ignore the imperfections that make their body unique and different. Loving someone with a physical disability means you love them with their disability. It means you know every aspect of their disability, and it only makes you want to be that much closer to them.” This paragraph is exactly what I want people who question interabled relationships to understand. 

I love each and every part of Charlie, from helping him get dressed, cutting food, walking behind him on uneven surfaces, to waking up with him during spasms at the wee hours of the morning. His disability is a huge part of his life, it affects him everyday. How could I not love it? It would be like not loving someone because they can’t grow a beard.

I wouldn’t trade the nights that I haven’t slept because of was holding him during spasms for the world. I will always be his voice when people have a hard time understanding what he is saying. I have no problem telling strangers to move out of the way before I run them over with his wheelchair and they don’t hear the first time either of us say “excuse me” or “watch your back.”

Thank you Ashley for this incredibly insightful article. You said all the things that Charlie and I could not find the words to do so. I highly recommend that you all check out the article, here’s the link:

https://themighty.com/2017/02/cerebral-palsy-and-romantic-relationships/

Does Charlie need 24/7 care?

Does Charlie Need Help 24/7?

A common misconception about people with disabilities, specifically those in wheelchairs, is that they need help 24/7 or they can’t be on their own. Being three months premature doctors didn’t think I would ever be able to walk. But as my life has gone on I’ve been able to do more than just be able to walk. I have been able to learn how to shower on my own, put my own seatbelt on. Each thing that I do on my own hasn’t come easily. Each thing has taken a bunch of trial and error.

When I first met Margaret, she said to me “just let me know what it is that you need help with.” From the very beginning she had made it clear she wanted me to be as independent as possible, she has no problem helping me but she wants be to be able to do thing on my own and for myself. In the past two months, I have become more independent than I thought I ever would, all thanks to her. I might be dependent on Margaret for a lot but not for everything, so the answer to the big question is: no,  I don’t need help 24/7. The biggest things Margaret helps me with are getting me dressed, cutting food(which I am beginning to help with thanks to her) and being my primary transportation. 

Another misconception is that Margaret can’t have her own life, because she’s with me, which is far from true. People might think that Margaret being with me holds her back but that is false. For example, dancing she sits on my lap in my wheelchair so we both experience it. Another example is when we go shopping I hold everything, she no doubt would say this is a massive perk. My wheelchair also holds Margaret’s purse which is a huge plus when going to pay (expect when people move too slow in front of us, ugh the worst lol). There is not much that limits what her and I can do together, we can pretty much do most things that other couples do.

If there is one piece of advice that I can leave you with it is: always remember at the end of everyday to say I love you or just simply grab their hand and hold it, always say thank you after your significant other does something for you, I’ve discovered it means the world. 

Now that Charlie has had his chance to explain that he does not need 24/7 care, I would like to comment on the care giving aspect of our relationship. There are so many little things that Charlie needs help with, or prefers help with (like opening a water bottle so he doesn’t spill it on himself and look like he peed his pants lol), but I do not even see any of these things as care giving. So many of the little things just seem so natural. We had a wedding that we went to and I got him all dressed and ready (minus the tie, thanks dad for that) and getting him dressed just seemed like an extension of getting myself ready, if that makes any sense. On the outside, it may look like a lot that I do for him, but in reality, to me, it does not feel like I am really doing anything. I really hope that all of that makes sense because I have no idea how else to explain it. But no, Charlie does not need constant 24/7 care and caring for him comes second nature to me and I don’t even think about doing things for him anymore(not that I ever really did)

Our Favorite Memories Together

Charlie: My favorite moment was when, well there’s a lot but I can only choose one. The moment happened a month ago at Jones Beach State Park. Let me set the scene, it was a perfect summer night with a beautiful sunset that happened seconds before. Going into the night I knew if it was possible I wanted to get out of my wheelchair and actually sit next to Margaret. That night that dream became a reality. Margaret found an open bench that my wheelchair could go right up to, I was seconds from something I’ve always wanted. Margaret grabbed my hands and helped me sit down on the bench. The look on her face was something I’ll never forget, it was pure happiness. It was a pinch myself moment, it couldn’t be real, expect it was.

Margaret: Not to sound cliche but, it’s so hard to pick just one memory. I could pick when we were on our first date sitting in my car waiting for that first kiss to happen. I could pick the first time Charlie came to my house and fit right in with my family. But the one that stands out the most to me is when he bought me flowers one Friday because I was having a terrible day. I had texted him during work that I was having a bad day and I was putting my phone away cause work was crazy. He messaged me to say he had a surprise for me when I got to his house later on. As soon as work ended I headed straight to his house and the second I walked in his room, there was a beautiful bouquet of pink roses on his dresser waiting for me. I almost started to cry, I hugged him so tightly. Flowers don’t have to just be for special occasions, they can be for whenever. I will never forget him doing that for me.

Get to know us

Hey everyone! Welcome to our blog, Traggically Maggical. Our names are Margaret and Charlie. We are in an interabled relationship. An interabled relationship is a relationship between someone who is disabled and a person who is not disabled. I, Margaret am the able bodied one in the relationship and Charlie is the disabled one. Charlie has Cerebral Palsy, otherwise known as CP, he uses crutches, a manual wheelchair as well as a motorized wheelchair. For the most part, he lives a relatively normal life. We look forward to sharing our lives with you and the places we go.