Abilities Expo 2021

This past weekend we attended the Abilities Expo in Edison, New Jersey. It was an incredible experience. It was hands down the most inclusive place that either of us have ever been and we met some of the kindest people. One of my favorite parts was seeing older interabled couples because it gave Charlie and myself a glimpse into our future.

We met this woman name Kristy Lacroix. She is a travel agent that specialized in booking accessible vacations, this is inspired by traveling with her husband who has MS. The presentation she gave was very informative. She spoke about all the different places that are in fact accessible such as Alaska, South Africa, most of the Caribbean, Ireland, as well as cruising through Royal Caribbean and Disney. She even had a copy of the sign that she puts on her husband’s wheelchair for airplane travel. Her website is http://www.wheelchairescapes.com

[not our photo]

The convention was an awesome experience for us as an interabled couple. I can say with confidence that this was one of the few times that we walked into a place and didn’t get looked at for having a wheelchair with us, and people did not assume I was Charlie’s aid, or his sister(one time I was asked if I was his mom, meanwhile Charlie is two years older than me).

Several different wheelchair manufacturers had booths and had products to try, some were even doing repairs. Seeing as Charlie does not often use his power chair and his manual chair is in good condition, we did not stop at any of those booths. There were several car companies that had vendors there as well, we did not check them out because we are not in the position to buy a new car just yet.

There was a dance company that did a few numbers that included able bodied dancers and wheelchair dancers. As someone who has danced her whole life and is limited in her dance abilities because of scoliosis sand being fused throughout almost her entire spine, it was incredible to see dancers of all abilities performing together. The name of the company is Dancing Wheels Company. They are located in Cleveland, and they perform all over, so if you ever get a chance, definitely check them out. I have a few clips that I’m including for you all.

[this video is owned by justinterabledthings]
[this video is owned by justinterabledthings]

This tap company, named Tap Dancing Hands Down, was definitely interesting to watch. The story of how it came to be hit close to home. The founder of the company was a dancer her whole life, her mom was also a dancer. Her mom had suffered a stroke and was no longer able to dance so the founder took a pair of black gloves and attached the tap parts of a tap shoe to the gloves so that her mom could still tap. I only have one video of them because the story hit too close to home having lost my mother a few months ago after a stroke in the beginning of 2020 and being diagnosed with brain cancer in 2021(if any of you want me to post about that, let me know and I’ll gladly share my mother’s story).

[this video is owned by justinterabledthings]

Overall, the Abilties Expo was an amazing experience, I cannot wait to go back next year and continue to network with other interabled couples and be inspired and inspire others.

New beginnings

Hey all, long time no blog. Life has been keeping us pretty busy. But now we have time to dedicate to our blog. Thank you for being patient with us. Our name has changed but will the content is going to be along the same lines, just more frequent and thought out. We have a lot of exciting stuff coming up that we cannot wait to share with you.

-M and C

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

Bring us Back to Boston

As we are sitting here during quarantine, we are both sitting here thinking about the days when we were able to leave the house and go places, not unlike everyone else. But Charlie had written a few thoughts about our trip to Boston back in September 2019.

How Boston came to be:

Margaret and I started planning the trip in the middle of July. I just threw out the idea and she loved it. We used TripAdvisor to find the activities to do and Facebook recommendations for the places to eat. We then wrote an outline of each day as a guide, (we kind of used it.)

First trip without parents:

It’s something I thought would never happen, but when we got the okay it was a surreal feeling. Margaret texted me “STOP, NO WAY?! The day of the trip time stood still, but when we were finally off I felt a great sense of freedom and independence. It didn’t really set in until we got into the room, I couldn’t stop smiling.

Our first trip together:

Boston was my first trip without my parents ever, but I wasn’t nervous at all. I trust Margaret with my life and our comfort level with each other is very high. We didn’t get to Boston until 10:30 and we were exhausted. That night was the first time we slept together and it was arguably the best nights sleep I’ve ever had. The next three days were pure happiness from the activities to dinners and everything in between. We can’t wait to do another trip one day soon.

 

Hello 2020

2020 started off way different than we thought it would. It has been a roller coaster to say the least, but that’s a story for a different day. Something happened that we had been talking about since September. So, since September Charlie and I have been spending every weekend alternating who’s house we were staying at. Well now we no longer have to make that decision. 

Charlie and I are now living together!

As of January 21st, Charlie moved into my house with me and my family, Wow, I can’t believe I just said those words, it has been almost three weeks of us living together and it still doesn’t feel real to either of us. 

Charlie had been spending more and more time at my house, which was easy for him to get into but not so much to get out of, my dad built a ramp, right before Christmas, so he would be able to get in and out of the house more easily. 

There were still other steps that we needed to take to make the house completely accessible, like putting grab bars on the toilet and getting a shower chair for the bathroom, and other “moving in” things that every couple has to do, meaning my room needed to be cleaned, I needed to get rid of some stuff, and make room for Charlies belongings (luckily he’s like most guys and does not have that many clothes haha). 

Within the first week that he moved on, everything was taken care of. We got a few small dressers from IKEA that were for Charlies clothes, we bought the grab bars, and the shower chair. The only thing missing, is a bigger bed, but we are both five feet tall and weight the same, so sharing a twin sized bed, is not the worst thing for us.

If it was not for the love and support from my family, this would not be possible, they opened their home and their hearts to Charlie and they have treated him like he is a part of the family since the very first time that I brought him home to meet them. It feels as if he is the son my dad never had, which is the best feeling, having my parents love him just as much as I do.

Living together has been an amazing experience so far, we are both learning things about each other and ourselves that we never knew. I cannot wait until the day we are able to live together in a place all our own, but my purple childhood bedroom will do for now.

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


Something bothered me at dinner.

Recently Charlie and I were out to dinner, like whenever we go out, Charlie was sitting in his wheelchair. We had been sitting there chatting away until the waiter came to take our orders. We were out for Chinese food(which Charlie says is a winter food and I keep questioning why). I ordered my meal and then the waiter says to me “and what is he having?”. This beyond upset me, but I played it off and said “babe, what are you getting?” and I gestured to him. That is when the waiter turned to listen to Charlie order his meal.

The waiter clearly knew that Charlie was capable of speaking for himself as per the fact that we had just been having a conversation before he came to take our orders. This is maybe the second time that Charlie have ran into a situation where people would ask me something about him. The other time we were at book signing from our favorite YouTubers, Shane and Hannah aka Squirmy and Grubs(I’ll insert a picture from that event below). We had gotten there a little late and so we were down an aisle of the bookstore, thus we could not see anything that was happening, but there was nothing to see, we just wanted to hear what they were saying. This lady that was standing in front of us, that probably wasn’t able to much more than we could says to me “does he wanna move over here so he can see?” I tap Charlie on the shoulder and say “its up to you” and he said to the lady “no thanks, we are good.” He handled it much better than I wanted to.

Just because someone is in a wheelchair, does not mean that that they are unable to speak. Yes, that is sometime the case, but the wheelchair also doesn’t mean that they can’t understand what you are saying to them or how you are acting around them.

Back to dinner, I wanted so badly to get up and walk out of the restaurant because of how bothered I was by this man ignoring Charlie and not speaking to him, but I didn’t. I chalked it up to the cultural difference and left it at that.

After dinner we went to the supermarket to get something for dessert, there was a girl helping the cashier bag and she had been giving me the dirtiest look the whole time we were waiting in line. I just kept touching Charlies shoulder and calling him babe so that way she knew that I was his girlfriend and not his caregiver.

I don’t understand why people can’t accept the fact that interabled relationships are a thing. Dating my boyfriend does not make me a good person, it doesn’t make me anything other than his girlfriend. I did not settle, I couldn’t “do better” than him. He is my best friend and the love of my life. I love him with every piece of me. We are saying because we love each other, and everything that comes with being with each other.

If there is one thing that I can’t stress enough, is always be an advocate. Always speak for those who’s voices are so often aren’t heard.

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/

The Importance of Reassurance

Reassurance/encouragement is important in any relationship, but I would go so far as to say that  it is more important in an interabled relationship. I know what to expect with my Cerebral Palsy every single day, despite that fact it doesn’t mean I don’t have bad days along the way. Some days are harder than others whether it be from stiffness or just wishing I could do more on my own; one smile or one kiss from Margaret instantly fixes everything. When Margaret just drops an “I love you” and says “I knew you needed it,” I’m reassured right then and there. 

Margaret is also amazing with encouragement. The first thing that comes to mind is when I put my seatbelt on by myself in her car. Her reaction was totally unexpected and made the moment even more sweeter. Another example is cutting my food on my own(with a little bit of help from Margaret). Like I said in the last blog everything takes trial and error. Margaret always cheers me on and never lets me struggle. Just remember how much your significant other is doing for you each day, a hug or an I love you can go a very long way. 

I never wanted to admit that I was a person that needed reassurance. I still don’t like to admit it, but I am getting better with it. Charlie is partly to thank for that. What I like to say is that I am very secure in our relationship, I don’t need reassurance about Charlies love for me(even though he reminds me every chance he gets), but I need to know that I am doing okay with everything. I need that little, gentle reminder that I am okay and that I am doing the right thing, and I am doing enough. I work full time and I am also going to school for my Masters(not to brag but I have a 4.0), I have a healthy and loving relationship, and I am an overall good person. I still feel that I need to do more, that I need to prove myself. Charlie is always there to remind me that I am doing great and that I do not need to prove myself. 

If there is anything that you take from reading this article let it be this: even if you think your significant other doesn’t need to here some reassuance, give it to them anyway.