Tag: disability

“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.

Have we mentioned?

For those of you that may not be aware, or those of you who do not follow our personal instagram pages which you totally should (@cmoerler93 and @ivegotthemaggic). We are engaged!!

image description: margaret’s left hand with engagement ring on it out in front of Charlie in his power wheelchair. Charlie is smiling.

We recently went to Disney, there will be another blog about our trip soon, and by recently I mean two months ago. But since then we have been enjoying the engaged life. We have set a date for our wedding and put a deposit down on a venue, which to me made it feel real that we are actually going to be married and spend our lives together. We have also had the opportunity to celebrate our engagement with our families, and apparently the place that we had our engagement dinner at, was the restaurant that my dad proposed to my mom. When he told me this it made everything more special since my mom passed only a few months ago. I had no idea that it was the same place until feet the fact, and it made it feel as though that was her being there.

The day that Charlie proposed, there was a rainstorm, as there is most days in central Florida and of course we continued to walk around in the rain because it felt good in the Orlando heat. As we were walking around in Epcot, there was a rainbow over the lagoon. And normally I would just smile at it and say “cool” but something told me that this was my mom telling me that she knew I was engaged and that she was happy for me.

Image description: margaret’s had stretched out showing off engagement ring. There is a rainbow in the background over the lagoon in the world showcases part of Epcot.

Like I mentioned before, we cannot wait to spend the rest of our lives together. Keep an eye on our blog and social medias for wedding updates and there will be more blogs about our experience with planning our interabled and accessible wedding.

A little surprise for you all!

SURPIRSE!! We have created a shop on Etsy!!

We have several different products with our logo on it as well as other advocacy related products. We have shirts, both short and long sleeved, a crew neck sweatshirt, some stickers and we are going to be creating more so if you have any suggestions for products feel free to send them our way! For the clothing products we have picked a varying range of sizes but if we do not have a size you want, let us know and we will definitely rectify it.

Here is the link to our site: https://www.etsy.com/shop/justinterabledthings?ref=search_shop_redirect

Please share our shop with people who you think would enjoy our products and want to learn more about our story as well as advocacy.

Another Airline Issue

When will disabled people be able to fly without worrying about their wheelchairs? Recently I read a story about a woman who had her wheelchair broken by an airline, specifically United Airlines. A woman, named Engracia Figueroa who was a huge disability advocate, had her wheelchair, which Engracia depended on for her daily life broken … Continue reading “Another Airline Issue”

When will disabled people be able to fly without worrying about their wheelchairs? Recently I read a story about a woman who had her wheelchair broken by an airline, specifically United Airlines. A woman, named Engracia Figueroa who was a huge disability advocate, had her wheelchair, which Engracia depended on for her daily life broken by United Airlines. And yes, I said it twice because these people that have their chairs broken and damaged are people, they are not just some faceless name, they are living breathing people who deserve their property to be treated with respect.

The following is a quote from an article from the Forbes magazine website “In July, Figueroa attended the Care Can’t Wait rally in Washington, DC. After Figueroa traveled back home to Los Angeles, she made an awful discovery — United Airlines workers had accidentally damaged her wheelchair. The $30,000 wheelchair had been loaded into the cargo hold, where it was destroyed. Figueroa had a spinal injury and a leg amputation, and her wheelchair was custom-designed to support her body. Without her wheelchair, Figueroa had difficulty balancing and sitting upright… ‘Engracia was forced to sit in a broken manual wheelchair’ for five hours in the airport, Hand in Hand explains — ‘Her struggle to maintain her balance over that length of time in the faulty device led to the development of a pressure sore. When she was finally able to return home, she experienced acute pain, and was admitted to the hospital shortly after.'”

This is absolutely disgusting. Because United Airlines workers did not know how to handle Engraicas wheelchair, she had to use a loaner chair which was not customized for her needs which lead to a pressure soar that inevitably lead to her untimely death after being admitted to the hospital.

There is an act in place to avoid situations like this called the Airline Carrier Access Act. airlines are required to repair and/or replace lost or damaged assistive devices, this would include wheelchairs; which when it comes to wheelchairs that is easier said than done because a customized wheelchair cannot be repaired or replaced overnight.

What needs to be done is that these workers who are handling these wheelchairs going into the cargo space, need to recognize the importance of these wheelchairs to their users lives. They also need to know how to operate and care for the chairs that they are responsible for.

The simple fact that this is the second blog I am writing about airlines and wheelchairs, is a problem. Myself and Charlie dream of a day where air travel is not this huge scary deal for people who use wheelchairs.

https://www.forbes.com/sites/lakenbrooks/2021/11/08/disability-advocate-engracia-figueroa-died-after-an-airline-damaged-her-wheelchair/?sh=2b30fda110d7

Let’s put this myth to rest

There is a myth that surrounds interabled relationships, and it revolves around care. Some people might believe that the care in an interabled relationship is one way, meaning that the able-bodied person is the sole person giving care. From the outside it looks that way, and sometimes it can actually be like that. Yes I do take more physical care of Charlie but he takes care of me too.

There is this notion that just because someone is disabled, that they cannot take care of someone and this is far from the truth. If I don’t feel good, Charlie instantly knows what to do. He is the most supportive and caring person in the world.

Taking care of someone in a mental way can be even more important that taking care of someone physically. I would argue that it is more difficult. Maybe that’s just me haha. So I think Charlie has the harder job between the two of us.

There has been so much going on in both of our lives the last two years, it has been a mental roller coaster for me and if it was not for Charlie, I would have been lost. He takes such good care of me.

Recently I saw a post in Instagram of an interabled relationship. The first picture was of the couple with stereotypes of what people think about interabled relationships. The second picture changed the caption to “interdependent.” This post resonated with me. There have been times when I’ve been looked at like I am a saint for being with Charlie and I don’t know what to say. Charlie is just someone I fell in love with who happens to be disabled. People need to start looking past the physical care aspect of interabled relationships. Just because someone needs physical care, does not mean that they are not capable of caring for their partner.

Here is the link to the Instagram post. She posts a lot of great stuff so please check out her page, https://www.instagram.com/p/CVKbQc4sbrr/?utm_medium=copy_link

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