Juana Ortiz at her college graduation.

For many people, Labor Day is a reason to relax and enjoy the long weekend. They don’t have to think about getting up early Monday morning to go to work. Unfortunately as a person with cerebral palsy, I see Labor Day like any other Monday. I am sure there are a lot of individuals like myself who are feeling the same way, or perhaps worse. Here is the reason why.

Back in July 2016, I wrote a story for The Mighty about people with disabilities who struggle with unemployment. According to the U.S. Bureau of Labor Statistics (July 20, 2015):

“People who have completed higher levels of education were more likely to be employed than were those with less education. At all levels of education, however, people with a disability were much less likely to work than were people with no disability. For example, 26.1 percent of people with a disability who had completed at least a bachelor’s degree were employed in 2014; among college graduates with no disability, 75.9 percent were employed.” *

When I wrote the story, I was searching for a job, and was very optimistic about finding employment. Now I must admit I am part of those statistics, something I was hoping not to experience. Despite having a Bachelor’s degree, I have been unable to get a job. One of my major dreams was to run my own nonprofit, Rainbow of Talent. I was looking for a job where I could use my skills as a writer and advocate for people with disabilities. That didn’t happen.

Each day it’s becoming harder to support myself. My bills are piling up, and I don’t know what to do. I  submitted my resume to GoodTemp. They help people with disabilities to find jobs. Their response was that my resume wasn’t strong enough.

I searched for work locally and spread the word among contacts. So far I haven’t be able to find any job. It has been hard for me to stay home and become aware of my sad reality, especially after all the struggles I went through to earn a degree. I didn’t want to stay home all day long. That was not what I went to college for. My major goal is to someday be able to say on Labor Day I will be off from work like the rest of the population.

Juana Ortiz’s book “I Made It” is available at www.juanamortiz.com and on Amazon.  

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Photo by contributor.

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Throughout my life I have kind of felt like I don’t fit in anywhere. When I was small it felt like there was no one like me in this world. I wasn’t quite like all my friends at school because I had mild cerebral palsy and was only in mainstream classes, yet I felt not quite like anyone else I met with a disability, either. As a small child, it was so hard to find acceptance of my CP and to truly understand it is OK to be unlike anyone else. Everyone is different. I truthfully struggled with this for quite some time.

I feel those of us with a disability the world may see as “mild” can struggle extremely hard to find our place in the world. Sometimes it can seem as if you aren’t accepted anywhere. This is where acceptance of yourself is very important. The realization that in all honesty, no one is like anyone else can be a hard one to reach. But in my experience, once you find it you feel as if a weight has been lifted from your shoulders!

To be yourself in a world that doesn’t embrace differences can be difficult. But within yourself, you can find the light to sparkle like a diamond! You are perfect just the way you are — you just need to believe that for yourself. Never be afraid to be yourself, believe in yourself and understand that no matter what the world thinks, within yourself you will find acceptance.

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Photo by contributor.


It is hard to believe I am now 49 and staring at my 50th birthday approaching March 14, 2018. How did this happen? Yet I feel every one of those almost 50 years in ways many do not. Most days this physical body feels more like it’s 90 years old rather than 49.

I have spastic diplegia cerebral palsy and began to notice really weird changes as I got older. It’s known as post-impairment syndrome, but some in the medical community do not acknowledge it. The reality is that there are currently 17 million people living in the world with cerebral palsy (in all its forms). Many are adults who are aging and trying to deal with the symptoms of this syndrome, which usually begins to manifest in the late 20s.

I am not talking about the chronic pain, chronic fatigue, osteoarthritis and loss of mobility or increased severity and frequency of muscle spasms. I am also not talking about the swallowing difficulties, chronic cough or weak lungs that are all secondary complications found in this syndrome and ones I deal with every day. The medical community needs to at least begin acknowledging these chronic symptoms, even if there are no current treatments.

In the last five years, I have encountered one complication I really was not expecting: extreme hypersensitivity.  I am not talking about mood swings; I am talking about extreme sensitivity to physical touch. This has surprised me more than anything else, as it was never a problem when I was younger.

Have you ever had a single hair fall from your head and land on your arm with a thud?  Well I have and it happens multiple times per day!  I am completely serious, hypersensitivity has got to be one of the most uncomfortable parts of my post-impairment syndrome and the hardest to explain to people, especially those closest to me. Imagine being severely startled every time your husband or wife touches you lightly or tries to whisper sweet nothings in your ear. This is not good when you have no standing balance! Now, I know people with CP still have their startle reflex, but this hypersensitivity makes it 100 times worse. It also does nothing to help the intimacy in a marriage — enough said.

I am not impressed!

My struggle with hypersensitivity is not something I have discussed with a lot of people. I suspect I am not alone, so now is the time to speak out. Serious funding needs to be put into research on CP and aging with subsequent treatments for post-impairment syndrome being developed and made available. All medical students need to study CP in depth (from birth through adulthood to old age) in order to provide adequate care, which is sadly lacking at the moment.

Seventeen million of us are waiting, and we cannot do it alone. My generation may not see the benefits, but the younger generations behind me must.

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Thinkstock photo by Ingram Publishing.


Going out is fun. Who doesn’t like going out for a few beers with friends? But with cerebral palsy, sometimes that can be hard, and when a few turns into a few too many it can be downright dangerous. Here are my tips for hanging out a bar or anywhere where alcohol is consumed frequently so you can enjoy yourself and others around you.

1. Know your surroundings.

When you walk into a bar, especially one you haven’t been to before, try to scout things out. Where may be the easiest place to stand or sit? Is your bartender or server coming to you? If not, maybe sit a little closer to where they are. Where’s the exit? Some bars can go casual to crammed in minutes, and it’s always easiest to know the best way in and out if this happens. Is there a back door exit that may be easier to get out than the front, and where does that lead to? If it’s an alley, you probably need to go out the front, but if it’s a street it may be easier to walk around outside than push through the center of a crowded bar.

2. Get your bartender or server’s names.

It’s mostly common courtesy, but it doesn’t hurt when asking for a favor to address someone by their name. I know sometimes after having a few and sitting for a while I stiffen up. If you have friends with you, it’s easy to ask for some help up, but if not, generally people are pretty happy to help. If they’re not, that’s not the place for you.

3. Know your limits.

This can go for anyone, but those of us with CP know one too many can throw us off physically and mentally. If you’re in a bar you have never been to before, and especially if you’re by yourself, it’s good to have a mental count of beers or drinks you’ve had. Otherwise you may just end up on the floor.

4. It’s OK sometimes to let strangers who never asked know you have CP.

Generally speaking, people are in a bar to drink and sometimes to drink a lot. I can’t tell you the amount of times I’ve had people think I was drunk before I even stepped up to the bar. I don’t why this is a drunk thing, but in my experience it definitely is. Sometimes it’s best to just get the confusion out of the way to the people around you or your bartender. This is 100 percent your discretion, but it can make things easier for people and possibly your bartender. Remember most people are just curious and too scared to ask, but if you get it out of the way sometimes it’s just easier to have a good time.

5. Falling in a bar is tough, but hey, we got this.

We all have our moments where we just fall down. In a bar, this can be downright embarrassing as well as a gateway for others to judge. Don’t worry; it’s OK. If you can get up on your own, try your best; if you can’t, communicate calmly with the people helping you. Don’t be afraid to tell the drunk guy helping you up to get someone sober so both of you don’t end up on the floor. If you’re drunk, know it and cut yourself off. Falling drunk with a disability is still falling drunk, and if you’re not careful you can harm yourself and others. If you’re not, you may have to explain yourself a little. I know this is tough, but it’s for everyone’s benefit including your own, so don’t be afraid.

6. You’re gonna get looks.

We often get those looks. The what’s wrong with that person? look. They are hurtful sometimes, but it’s just because people don’t understand. If you’re of legal drinking age, you’ve probably figured this out. You may get these looks more at bars because people think you’re drunk. This is when tip number 4 can come in handy. If you don’t want explain yourself, just press on.

7. General bar safety goes double for those with a disability.

Don’t take drinks from someone you don’t know. Who knows what’s in that thing. Don’t be afraid to refuse a drink even if handed to you by the bartender. If you’ve reached your limit and someone buys you a drink, don’t be afraid to say no thank you. Again, a sloppy drunk with a disability is still a sloppy drunk — don’t be that guy or gal. Be careful of new people. Don’t be afraid of making friends, but have your wits about you when conversing with strangers.

8. Have fun.

At the end of the day I hope you’re out to have fun. Try not to let your CP and everything that comes along with it stop you from having a good time. We all have something we have to deal with; your CP is just part of your something. Put it aside, kick back and enjoy yourself.

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Thinkstock photo by AiJohn784.


It’s August, for many families in the United States, back-to-school season is dawning.

Every new school year holds fresh challenges for every family, from the academics to the friendships to all the other elements that comprise a typical grade-school experience. Parents want the best for their kids and will go to great lengths to ensure their children have all the tools, knowledge and social savvy they need to be successful, popular and well-regarded by peers and teachers alike.

For parents raising children with disabilities, back-to-school season is a little harder than it is for parents of able-bodied or neurotypical children. There’s always a nagging fear of bullying, academic difficulty, issues with mobility and more.

Will your child’s classmates treat your child like a friend or like a prop? Will the child’s teachers be helpful and kind? Preparing both, yourself and your child for the fresh school requires a whole different plane of preparation and forethought, and even then, you find yourself at the mercy of the school culture itself.

The most important thing you can do to prep your child for the new school year is to encourage their confidence. As much as we wish it were different, we can’t email the parents of every single classmate with a list of dos and don’t for how their children should treat your child. We can’t force kids to be nice, and we certainly can’t shield our children from the realities that some kids will be rude or even straight-up mean to them.

 

What we can do is encourage them daily and remind them of who they are. Praise your child every day leading up to school for their positive attitude, their bright smile or their generosity. As the old saying goes, if you say something long enough, you’ll start to believe it. Make sure your child is confident in who they are — from their personalities to their disabilities — before other students try to define reality for them.

My grandson Elijah, who has Cerebral Palsy, is one of the kindest boys you’ll ever meet, and his love of reading knows no bounds. My family and I remind him all the time we love him for who he is, from his affable demeanor to his physical differences. We want him to be as confident as possible in who he is.

As you shop for back-to-school items, encourage your child to define their own style. Maybe in the past, your child has gravitated towards items with cartoon characters on them but now would rather explore abstract patterns. Let your child be confident in who they are and express themselves how they see fit. Throughout the school year, they’ll face enough people telling them what they should do and who they should be, but as the parent, you can guide your child through self-discovery and continue to offer moral support as your child navigates their personal identity.

Back to school season can be tough, but teaching your child self-love and confidence will certainly make it easier.

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Thinkstock image by IR_Stone


Dear Idina Menzel,

I discovered your album “I Stand” right before my Mom got diagnosed with cancer for the first time. I instantly fell in love with every song and lyric. You were saying everything I was thinking and feeling but couldn’t articulate. You got me though those days. After a long day filled with fear, I would go into my room and watch YouTube videos of you on the “I Stand” tour. You made me laugh in every video. For a little while each day, I was able to forget the fear.

“Brave” helped to get me through. When I was trying to be strong for my whole family, I would come into my room and cry. You and your music helped to pick me back up every time. You were my strength. I saw you live for the first time with your symphony tour and laughed the entire time. You inspire me to keep auditioning for shows, to keep working in my voice lessons and singing the music I love.

I cried when I first heard “I See You.” That song is me for so many reasons. I grew up feeling alone, in hospital rooms, doctor’s offices and therapist’s offices, due to all of the treatment I needed for my physical disability, cerebral palsy. I felt like nobody really saw me and understood me. You did. That song showed me again and again.

Another song that means so much to me is “Like Lighting.” I have generalized anxiety disorder. It is an everyday challenge to believe in myself and trust myself. You are saying everything my younger self needed to hear and that I need to hear now. You inspire me to continue to work towards being the the best version of myself I can be, and to believe in myself. You inspire me every single day. Thank you for seeing me. Thank you for always being here for me. I love you so much!

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Photo via Idina Menzel Facebook page.

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