cerebral palsy – Just interabled Things

“Confessions from Disability Limbo A Commentary on Society” A Book Review

A dear friend of ours wrote a book titled Confessions from Disability Limbo A Commentary on Society. His name is Kevin G Nuñez and he is based out of New Jersey, he is originally from San Jaun, Puerto Rico. Currently Kevin is the Vice Chairperson of the New Jersey Council on Developmental Disabilities. Kevin was born with Cerebral Palsy as well as his twin brother.

The book starts out with a short story, which if you are anything like me, you wish it kept on going. It was from the perspective of a young man with Cerebral Palsy who is working as a CIA analyst providing technical support. One morning he shows up at a friends of his from high schools house one morning to try and help their family. I do not want to give any spoilers away but, trust me, it is worth the read.

Kevin writes from real life experiences. It is refreshing and eye opening to read a book about disabilities from someone who is actually living with a disability.

Each person living with a disability has their own unique experience with their disability. Just because people have the same disability, does not mean that they have lived the same experiences, Kevin and his brother each have had different paths that they have gone down even though the both have Cerebral Palsy.

One of my favorite things about this book is how candid Kevin is about his experience living with a disability. He lived in Puerto Rico until he was four years old and would visit every summer growing up, he talks about how there is a lack of accessibility there and how that now prevents him from continuing to visit has he ages,. which is sad to think about the people who have not been fortunate enough to move to a place that is marginally better with accessibility.

Kevin spends a portion of the book discussing what he would do if he could spend 24 hours in a body that was not disabled and for him, it is the small things that able-bodied people often take for granted.

The most refreshing thing that I have read is when he talks about body image. We do not often see men speaking out about dealing with body image issues let alone men with disabilities.

I recommend reading this book if you want to have a bit of insight on what it is like to live with Cerebral Palsy, or just being disabled. It is well worth the read. If you read it and enjoy it, Kevin has a blog of his own as well (https://advocatekevinnunez.wordpress.com) check it out. He is one of the kindest and funniest people I have the pleasure of calling my friend.

Here is the link to purchase the book https://www.amazon.com/Confessions-Disability-Limbo-Commentary-Society-ebook/dp/B09B81DLZS?ref_=ast_author_dp

Our first experience with blatant ableism

This weekend Charlie and I went to a concert at MetLife Stadium. The venue was extremely accommodating with exchanging our tickets for accessible seats and made sure we were aware of where all the elevators were and that there’s a family bathroom and there is supposed to be an attendant there to let us into the bathroom because it is supposed to be locked.

After we went to exchange our tickets and got our first drinks we went to go into the family bathroom. We didn’t need the attendant because there was someone walking out as we went to walk in.

When we are out in public, Charlie prefers to use the family bathroom, which is also called a companion bathroom. If Charlie were to use a regular bathroom with stalls, he has to navigate a tight space on his own, which is taxing on his body because we mostly use his manual chair when we are out. When he uses a stall bathroom, he cannot close the stall door behind him and he is just exposed to the whole bathroom. So to give him the respect he deserves when it comes to the bathroom, he uses companion bathrooms.

In between two artists sets, Charlie asked me to take him to the bathroom, so off to the family bathroom, aka a companion bathroom. There was a line, that was mostly made up of young, able bodied girls. There was a water fountain next to the bathroom, so I went to the front of the line and asked if they were waiting for the water fountain or the bathroom. The girl in the front of line said the bathroom. I simply said to her “well you do know that this bathroom is meant to be a companion bathroom and that is the priority for this bathroom.” She rolled her eyes at me and let us go in front of her. But as we are in the bathroom she is starting to be dramatic and literally yelling about it “it’s a family bathroom” because of the commotion Charlie wasn’t even able to pee, felt so horrible that he wasn’t able to go.

When we were walking out of the bathroom the girl continues to tell me that it’s a family bathroom, mind you this girl was by herself. And I said to her “yes but it is also for disabled people because for some of them it is the only option for the bathroom” she goes back at me still saying that it is a family bathroom, I repeated what I said to her. She then goes to me “well you don’t have to be such a b***h about it” I responded by saying “go f**k yourself”. That was all I could say, I wanted to fight this girl so bad and I have never been in a fight in my life.

This was the first time that I have experienced such blatant disrespect and ableism in my life. The reason that I was so angry was because it was disrespectful to not only Charlie but to all disabled people. This is bathroom is a place that disabled people can use the bathroom privately and with the respect that any human being wants and deserves.

This whole situation made me so angry that I went to guest services to ask them what to do. I kept apologizing to the staff member because it looked like I was yelling at her and I told her that I am not someone who comes and complains like this but I did not want this happening to someone else. I told the staff member that I know it wasn’t her fault and I was sorry and she told me “no as the venue I want to apologize because it our fault” I told her how much I appreciated her hearing me out, she said if I see the girl again to find someone in an orange shirt and let them know.

Even after this, I was not able to calm myself down and I kept apologizing to Charlie because I was acting so out of character. I asked him if it was okay if that we go home. Charlie was more than understanding and said that if that’s what I wanted to do that what we were doing.

It’s been 24 hours since this happened and I can still feel my blood boiling over the situation. I want to be able to educate people and make change for disabled people so that someone else does not need to experience what we just did.

A comment on burnout

We are so sorry for how sporadic our blogs have been. It is a real goal of ours to get better this summer when it comes to our blog and our shop. Right now I have something that I specifically want to touch on, which is usually how I get inspired for a blog, I’ll see something that I really want to talk about on this platform that I am trying to create.

Recently, Charisma from Roll with Cole and Charisma, another interabled couple, has been sharing posts on instagram called “Caregiver Mondays” and a recent one was about caregiver burnout. Her post resonated with me immensely. She talks about the specific things she notices in herself when she is beginning to feel burnout and it made me look at myself and think about the “symptoms” I feel when I am beginning to head towards burning out. She talks about how she takes time for herself when she is feeling burnout. “I realized that if I didn’t take care of myself, I couldn’t be the best version of myself for Cole(her husband)and for others” this hit me like a ton of bricks. I strive to give Charlie my all when it comes to taking care of him and helping him to live the life he deserves, but I need to make sure that I am taking care of myself too. If I am burnout, that’s not the best version of me, and Charlie deserves the best version of me.

I have yet to figure out to combat the feelings of being burnt out within myself yet but it is definitely something that I am working on.

Something that is an important thing to me is when I am feeling burnt out is that I do not make Charlie feel like he is the cause, because he is not. I do not want him feeling like he is a burden simply because I feel burnt out.

Here is Charisma post that I referenced (https://www.instagram.com/p/CewL7uQpxvc/?igshid=YmMyMTA2M2Y=)

Spasms on vacation

Spastic Cerebral Palsy is the most common type of Cerebral Palsy. I have mild spastic CP where my left side is weaker then my right side of my body. I’ve always had stiff muscles and stretches have always helped, but it wasn’t until a few years ago that spasms started to effect me on a daily basis.

I remember the first time they happened vividly. Margaret and I were on our first vacation together in Boston in September of 2019. It was early in the morning and out of nowhere my legs just started flying up uncontrollably. Margaret woke up with me and went down to her car to get a heating pad and Advil to see if it would help because the pain was excruciating. She made a pit stop to grab food from the buffet but ended up dropping the entire bowl of cereal in the elevator, while the maid was in the elevator with her. I will never let her forget it. Anyways, after a few minutes the heating pad and an Advil worked and my spasms went away.

Following that vacation, spasms became a daily thing when my body is falling asleep, waking up, (especially during the winter and stormy weather). How do we deal with them you must be asking. Well honestly they are apart of our nightly routine now. Margaret does an amazing job keeping pressure on my legs often moving with me throughout the night so I can stay comfortable.

Margaret is not an angel, saint, or whatever else you want to call her for getting me through my spasms. It’s something that has become second nature to her and she wakes up with me each and every night to simply remind me she’s right here and that it’s only a few minutes of pain each time and it is not going to last past those few minutes. To be honest, not many people would be built for that, but Margaret has always been.

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

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 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.

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.