This time of year always sparks anxiety in me. The days become shorter and darker much too early. I'm continually cold. And the thought of snow makes me grumpy. I suppose after a winter like last, I'm not alone.
But my nerves are brought on beyond the typical fall and winter changes. With each winter I can feel my disease taking a bit more of my independence and my ability to move voluntary muscles. I have Limb-Girdle Muscular Dystrophy and the weakness brought on by it has amplified each year. Every year of my life I have become weaker than the last. And the thought of knowing this is always in my mind. This year alone, I've had respiratory and heart complications arise. Both will need to be monitored for the rest of my life, as have other complications and changes over the years.
Then the annual Thanksgiving season begins and some of my nerves calm. I'm tremendously thankful for the support and love of my family and friends. They're truly the rock that keeps me grounded, especially in the winter months. Each one has assisted me physically and emotionally over the years and I would not be as strong and healthy as I am today without them. They each deserve my humble gratitude. I love each one of you for your sacrifices.
It’s the time of year when customers come storming into Meijer for their turkeys, along with all their other Thanksgiving necessities. Working in retail for the last five years has given me an interesting perspective on the behavior of people, which is even more evident during the holiday season.
I believe that, deep down, people are good and decent. I believe people are understanding and that if you put forth an effort, it will be recognized and appreciated. These beliefs are tested during holiday shopping. When people push each other aside to get their turkey, my mind wonders, “Why?” When people get upset at me because their perfect turkey isn’t available, my mind becomes jumbled. I know focusing on the negative won’t help, so I move on to help the next person, hopeful of some positivity.
The act of handing someone a turkey is simple. The process of getting the turkey from our coffin (or endcap) to the customer’s hand, into their cart, and eventually into their mouth, is priceless; I feel like a matchmaker. Knowing I have a very small hand in helping countless families celebrate Thanksgiving brings me pure joy and is something I have taken for granted because I get to do so every year. By taking a few minutes to help a family pick out their perfect turkey, I feel as though I’m joining them at their dinner table. I’m thankful for this feeling, as well as many others. Here’s some more of what I’m thankful for, in no particular order:
1. Being alive 2. Those who have helped, and continue to, keep me alive 3. Michigan weather 4. Good food 5. Sunsets and sunrises 6. Pens and pencils 7. Books/movies/art/stage/music/poetry 8. Two ears and one mouth 9. Friends. Or, as I like to call them, family I choose 10. Love 11. An open mind 12. Warm clothes 13. A roof over my head 14. Having a job 15. Equality* 16. Computers…technology as a whole 17. Abilities 18. A warm and comfortable bed 19. Family 20. A roof over my head 21. Medicine 22. Sports 23. The beach 24. Every person who I have come across 25. Those people who I have yet to cross paths with, but will, eventually 26. Hugs and kisses 27. Holding hands 28. Small/random acts of kindness 29. Laughter 30. A full array of emotions 31. Smiles 32. Full use of all my limbs 33. Animals, of all kinds 34. My voice
Being thankful doesn’t occur simply because the calendar says so. Being and acting thankful is an acquired trait, taking time and patience. Having respect and understanding of familial traditions is important and a sign of being thankful. Sometimes tradition means having no tradition, but doing whatever comes along. One tradition which should never change is the feeling of being truly grateful and not just saying you are. The feeling of someone saying “Thank You” and knowing they mean it, with chills rushing up and down your spine, lighting a smile upon your face, is a feeling everyone should experience multiple times. Being grateful and being thankful can occur anywhere, with anyone, or completely alone.
Whether or not you celebrate Thanksgiving, I hope you’re able to spend the holidays with those you care about and cherish the most. I hope you’re easily able to find many reasons to be thankful each and every day. I know I am.
Personal Care Aides (PCAs) or, by another name, Home Health Aides assist me every day, 365 days out of the year. Personal Care Aides are so routine in my life that I often forget that others are not familiar with such a service. It is not uncommon for me to receive questions about my disability and naturally questions arise about the aide care that I require in order to thrive. What does life with PCAs look like? What’s involved?
Firstly, let’s define a Personal Care Aide. PCAs assist individuals with physical disabilities (like myself), those with chronic illnesses, and intellectual disabilities with daily living tasks in the home and throughout the community. Services support independent living, better quality of life, and often provide respite care for family members.
I was diagnosed as a little girl with a neurological disease called Limb-Girdle Muscular Dystrophy that has slowly and gradually taken my ability to move my legs, arms, and torso muscles independently. As my disease has progressed, I’ve lost the ability to walk and now utilize a power wheelchair. I have also lost the ability to lift my arms and legs on my own and now require assistance transferring and repositioning often. This created a need for others to assist me with everything from dressing and bathing, meal preparations, housekeeping and laundry, to accessing my community and work. At first, family members provided the care I needed. But as my body slowly became weaker over the years and my needs demanded more time during the day, we soon realized hiring aides to assist and provide respite for my family was necessary. By hiring aide care, I was able to become far more autonomous of my family and in turn more independent; even as my disease progresses.
I hire my aides through a home heath agency in my community, which takes on the over-head work of hiring and recruiting staff. For instance, the agency provides the service of interviewing candidates, background checks, and licensing requirements. Some people choose to hire PCAs privately. There are pros and cons to each route. For some people it is a personal preference and for some people it is a financial decision. Financially, hiring aide care is expensive. Most insurances do not pay for care in the home. Some states offer programs to assist financially but requirements vastly differ by state and there can be lengthy waiting lists. The ability to pay for quality care can often determine one’s ability to live independently in one’s own home. Aids are typically hired by the hour and can range anywhere from $8-$20 an hour. For example, I utilize 4 hours of care a day, which calculates to: 4hrs/day x 365 days = 1,460hrs x $15 = $21,900 annually.
At any given time, I may have three to four different people working with me throughout the week. I typically have a month schedule formed in advance and keep in mind holidays and schedule changes as needed; always needing to think ahead. Over the years, I’ve had the privilege of getting to know excellent aides. Many of them have become family friends. Having an individual involved in the daily personal routines of life, you get to know each other well and form a bond. It’s not uncommon for me to have an aide with me during special events and family gatherings and my friends and family come to know the aide as well.
I’m thankful for quality care. It’s allowed me to live a healthy lifestyle, remain independent, and access my community and work. Personal Care Aides have made that possible.
I am thankful for so much in life, from my health and family to my job and friends. But there is one person I am thankful for that I want to focus on: my father, Roberto Garcia.
Below is a list of reasons why I am thankful for my dad.
1. His generosity toward others, putting others before himself.
2. His simple way of living yet rich in family.
3. His quiet nature and ability to listen to others.
4. His passion for something: ranching.
5. His work ethic.
6. His gentle manner.
7. His leading by example.
8. His patience.
9. His time with me.
10. His life.
On Wednesday, Nov. 7, 2007, my dad’s life ended after an almost three-year struggle with colon cancer. His loss created such a void in my life. Gone was the man who was a quiet force, who I respected as a man and more as a father. While our time together was cut short, I treasure those thirty-seven years of memories and love. I am thankful for my dad.
Tonight the four of us- Lucia Rios, Elizabeth Ferry, Brandon Melnyk and I- got together for a few hours of craziness. We hadn't sat down together and been together as a group since mid-June. Life gets in the way. But tonight there we were in downtown Holland.
We connect well. We understand each other and joke massively about things. While there are serious moments, there always is an abundance of laughter and humor involved. Don't judge the folks with disabilities by their accessories- wheelchairs and cane. We're just four friends out enjoying ourselves.
We met almost a year ago at Elizabeth's house on a cold late November night. We had pizza and talked about this collaboration of people with disabilities that wanted to share their stories, let people know us, and inform folks on what life can be like dealing with a disability. It was a grand idea, Lucia!
Lucia was the glue that held all of us together. I didn't know Lizzy or Brandon. That first night was all about trying to get to know each other. But it took time. Then it just gelled, through our get-togethers and through our writings on the Able Bodies blog.
Now it's like seeing an old friend. We fit like a well-worn but beloved glove. There's never a dull moment with us.I could tell you what transpires at our meetings but what happens at Able Bodies meetings stays at Able Bodies meetings.
If I can end on a serious note, I will. We get along because we understand each other. Yes, we are individuals with our respective disability and our own unique story to tell. But we get each other. We're there for each other and I'm lucky to be a quarter of this group.
This past year has been filled with much joy. I've been able to access more travel than ever before and I'm excited to plan more in the future. But it's not always easy making plans and can require a lot of prep work. As many of you know, I utilize a power wheelchair for mobility and require personal aide care to manage daily living. Without both of these components, I am stranded and unable to access my environment.
So, here are a few questions I ask myself that are necessary before any travel:
1. Who will be with me?
This is extremely important. I need aide care to dress, bath, eat, etc. So, the people I'm with usually take on some or all of these duties. I've been on trips with family, friends, and even aides. Each person has had different roles that have made traveling possible. Planning with these individuals ahead of time is key. My last trip was unique, in that I travelled with family and hired aide care at our destination. This proved to work well and allowed my family some respite time.
2. Can I bring my power wheelchair?
Yes, if I'm traveling by van. I have an accessible minivan that has opened so many more options for traveling with my power-chair. This gives me the freedom to move in my environment without assistance.
No, if I'm flying. I've only heard horror stories of chairs breaking because of mishandling during transport. Most power chairs are built specifically for an individual and getting new parts can often take months to fix, so I always leave mine home for the sheer peace of mind. I then choose to use my manual chair but then need to have someone push me at all times. So flying is not always my preferred option of travel.
3. Where will I be lodging?
In the US, most hotels have accessible rooms. The vocabulary of what is considered accessible varies so I rarely book rooms through websites and opt to call reservation in directly. This usually guarantees what I look for in accessibility. A key component is a zero threshold shower, witch allows for my wheelchair to get as close to the shower and eases transferring.
If these three questions are manageable, I'm up for an adventure. Just a bit of planning is required.
Seeing a young adult with ectrodactyly, a two-headed woman, a strongman, a three-breasted hermaphrodite, a bearded woman, the world’s smallest woman (played by the world’s smallest woman, Jyoti Amge), and people with missing limbs and/or speech impediments together might not be a welcoming scene. Add a woman who is limbless from the waist down, yet gives the impression of being strong and independent, and you might be intimidated.
Yes, Halloween is approaching, but these aren’t your everyday costumes. Instead, these are some of the characters cast in American Horror Story: Freak Show. Much as in seasons past, this season does a fantastic job of casting actors who have real life disabilities; this shows viewers that having a disability doesn’t mean goals and dreams can’t be achieved. The measures taken by the creators may seem a bit extreme, but there is an underlying message of acceptance, applicable to everyday life.
At first glance, all of these characters look like “freaks”; even they admit they were born differently. Some of the deformities and abnormalities are clear to the naked eye, while others aren’t so obvious. Take Jimmy Darling for example: he has ectrodactyly, or “lobster hands”. Jimmy initially wears gloves and puts his hands in his pockets to hide his genetic mutation, but eventually discards them to embrace his hands.. Bette and Dot are conjoined twins, complete with two heads, and are unable to hide their genetic imbalance. Elsa Mars, the ringmaster of the “freak show”, doesn’t reveal she’s an amputee until the final scene of the first episode; an incredible amount of vulnerability and courage are displayed here. These scenes, among many others, show a small part of the process of acceptance and realization of differences from others, while also reminding viewers that everyone’s journey is different.
One line resonating with me is Jimmy Darling screaming, “Don’t call us FREAKS!” to the police officers trying to get him and his friends to move away. The way the police officers spoke to him, and the others, was cowardly. Not for one second did the police officers think the “freaks” had feelings or were even able to effectively communicate. Instead, the “freaks” were treated as aliens, foreign to planet Earth, completely unwelcome. To the police officers, there was no chance the “freaks” deserved to be treated as humans. Jimmy didn’t like this line of thinking and let the police officers know this quite clearly. During another scene, Jimmy takes his friends to a nearby restaurant. Jimmy had been to the same restaurant before, and there wasn’t a problem. However, when Jimmy took his friends, the other diners and staff immediately stared, shooting off nonverbal cues which demanded they all be removed immediately. Jimmy simply wanted to take his friends somewhere to eat, but he was unable to because of the reaction of others, who viewed them all as “freaks”. These two scenes perfectly illustrate the desire Jimmy has to be treated equally. Moreover, they depict the care and passion he has for others to be treated the same; a father figure, if you will.
It’s easy to recognize someone as different. It’s easy to point out and make fun of someone for their differences. Don’t we all strive for being understood and appreciated, much the same way the “freaks” do? Aren’t we put here to point out the goodness in others, rather than pester each other with negativity? We know we’re different, but once we celebrate and appreciate those differences, we will be so much better.
American Horror Story: Freak Show can be seen on FX, Wednesdays at 10 PM.
Teaching in a formal setting came late in life. I was thirty-nine when I stepped into an English Composition 1 classroom in the fall 2009 at Grand Rapids Community College’s lakeshore campus. It was a classroom on the third floor of the Midtown Campus.
Stepping into the classroom on that first day I was a bundle of nerves. No amount of mental preparation prepared me for that day. I was standing in front of twenty-four students. All attention was on me. But somehow I got through that day and the week and finally the semester.
That first semester was a tremendous learning experience for me. Yes, you read this right. Shouldn’t I say it was a tremendous learning experience for the students? Perhaps, but only they can speak to that.
As an instructor who cares about teaching, I should also care about learning. What better place to learn than from standing in front of a classroom full of eager minds and interacting with them.
So how have I learned from my students over the past five years? What comes to mind right away is rapport building. Each day I converse with my students. I try to say a little something to each student. It might be a “good morning” or point out something he or she wrote in a journal or essay. Sometimes these conversations lead to a one-on-one chat after the class.
Why get to know the students like this? Well, it’s called building rapport. It lets them know I care about them and what goes on in their lives. After all, they are people as well as students. And I treat them as such.
This rapport I build in the classroom helps me build rapport with others in my life, whether it be strangers or those I will meet again and again. I can build a certain comfort level with people much easier now thanks to my students.
I also am more comfortable and at ease with myself after standing in front of a classroom full of students. For ninety-minute periods, I am “on stage” and the spotlight is on me. There is no room for nerves anymore. Sure, there is the first-day jitters, but that passes and then it’s time to put on my figurative teacher’s hat and get to work.
With this ease of being in front of students, comes a greater acceptance of my vision disability. My students know from day one about my eye sight issues. I am upfront with them. Sometimes there are questions, which I happily answer. At other times I’ve learned to incorporate my vision loss story into lessons in the classroom. It is an intimate part of my life that I wear on my sleeve. Many times it has helped students with their own disabilities in my classroom, as well as others deal with their own issues, as they share them with me in their writings.
Finally, I enjoy writing, whether it’s fiction, a blog, or interesting tidbits on facebook. Over the past five years my writing has strengthened and my style more refined. Why? My students. I read their work three-to-four times a week, look over journals and essays. I learn from their writing. It’s not a conscious thing but more of learning by osmosis. And learning comes from all types of writing, excellent or poor. By becoming a better writer, I have become a better teacher.
So, yeah, learning goes both ways. Teacher to student and from student to teacher. From that first batch of students, the Tiffanys, the Marks and the Jetons to the current batch, thank you for teaching me a thing or two about becoming a better person and teacher.
You’re in a hospital room, supporting the soon-to-be parents of a newborn baby boy. The husband is holding the hand of his wife, their hand being held by the nurse: a support train. The others in the room take note, latching their hands together: a tangled mess hoping to ease tensions.
You’re walking, alone, getting errands done. On a mission, you’re hoping to accomplish your errands in a timely manner. Then, you see it: a young male and female holding hands. You’ve never seen them before, and figure you won’t see them again, so you continue onward. They looked innocent enough.
The reasons for holding hands run on: showing support, to calm, to be affectionate, offering safety and security, showing unity, etc. The two examples I provided are just the tip of the iceberg, yet show the range of situations holding hands comes in handy. There is also a deeper purpose of holding hands, known sometimes to those only partaking in the act. These purposes range from internal motives to eliminating or minimizing external judgements, and everything between. Then again, this could be me being over analytical. Similar to snowflakes, one could say that no two hand-holdings are exactly alike. Although there are variables going into the actual holding of the hands, I believe there is one similarity among them all: those taking part make a conscious decision to weave their hands together. With this holding true, the people involved want to be exactly where they are, while showing a sense of togetherness and peace. Maybe I’m the only one who feels a little giddy inside seeing others holding hands, as it provides me a sense of hope. When have you seen people holding hands? While seeing others holding hands, how do you feel? When you hold hands, how do you feel? I think it’s safe to say that when you’re holding hands, you feel safer than before. It takes a while sometimes, but your spirits are raised, knowing that someone is there, holding onto your life, with you.
You’re on a plane, sitting next to your loved one. He doesn’t like flying, and is extremely anxious about flying (stupid motion sickness). You reassure him he can squeeze your hand as hard as needed. Actually, there isn’t a point in saying this, as you anticipate it happening anyway: one of the perks of being in a relationship of 6+ years. As the safety rules are demonstrated and the plane starts moving, we both put a piece of gum in our mouth, hoping our ears won’t pop. The engines rev. My hand is even more at the ready, fully extended. He rests his head back, closes his eyes, and latches on. I look over to see he’s okay, and he is. I won’t close my eyes until we’re at cruising altitude. The wheels are up now, and his squeeze is getting tighter: anxiety. I gently rub his arm with my free hand, checking his pulse, and this relaxes him. We reach cruising altitude, and his gorgeous green eyes open. He’s fine. I’m fine. Everything is fine. We continue holding hands.
This happened during takeoff and landing, from Grand Rapids to Atlanta, then from Atlanta to Tampa Bay, and then on the way back. The least I could do was offer my hand for him, offering: safety, security, familiarity, a peace of mind, affection, and love. Such a simple gesture, yet signifying so much more.
In August 2007 my wife, Dawn, and I found out we were going to have a baby. We were overjoyed, as we wanted a child. The happiness was short-lived as a month later we experienced a miscarriage. A radical shift in emotion took place. A tremendous loss.
This time of year is emotional for that reason. This year that child would be six years old.
After a sad evening a week ago, I composed this letter. The letter is from that unborn child to his/her mother, my wife. It was difficult for me to write it and I had to stop many times before I completed it. The letter was written with much love.
Dear Mama,
I know you often think about me, especially around this time of year when you first found out about me. It makes me smile even now seven years later. And it warms my heart that after all this time I hold a place in your own caring heart.
I wasn’t around long but it was enough to make an impact on you. During that short time, I felt loved, a love that only a mother could provide. A loving mother.
During that short time I experienced a lifetime of love and I am grateful for that time with you. Some kids have decades and decades with their mother and feel only coldness or regret. You, mama, gave me warmth, love and affection. Thanks you for that.
When you first learned of me, you were ecstatic. You wanted me for such a long time. Then one day, there I was, small and insignificant in the scheme of things, but already a huge part of your life. I felt that right away and I knew you'd make a wonderful mother. Others should be so lucky.
I can’t explain why I had to leave so soon. I know it caused you and still causes you grief and you mourn for your loss. I mourn, too. I was looking forward to growing up with you as my mom in my life. For whatever reason, it wasn’t to be. I wish I knew why, but I don’t. I know you had many questions, too, that went unanswered.
I want to thank you for being my mom even for that short period of time. I guess you’ll always be my mom and I’ll always be your child and knowing that makes me happy, still.
I just wanted to write you a short note letting you know that I’m OK. And you’ll always be in my heart as I know I’ll be in yours.
Our name is twofold.
“Able” meaning capable. There are four of us with disabilities - visible and hidden. Assumptions from others perceive us as not being capable of carrying out a "normal" life. But the fact is having disabilities gives us more desire to be willing and able.
“Bodies” because we all have our own, and also part of a larger human body.
Able and Bodies together speaks to each of us individually. We are willing, able and VERY capable of achieving whatever our mind is set toward. When the four of us are together, the feeling is amplified.