AbleBodies

Travel Necessities (I don't mean shampoo)

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.

- Elizabeth -

Freaks Looking For Acceptance

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.

- Brandon

Halloween and Wheels!

In the spirit of halloween and the fun costumes we'll be seeing soon, check out 8 of my favorite costumes for those sporting wheels. Happy Halloween!

 

  

 

 

 

 

 

Learning Occurs Both Ways

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.

- Roel -

I Want To Hold Your Hand

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.

 

- Brandon

"Dear Mama"

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.

Love,
Me

- Roel -

Lucia's normal ...

Most days are pretty uneventful. I wake up - not usually willingly - take a shower, get dressed and drive to work. In fact I rarely dry my hair, and the first words out of my mouth as I speed through the doors at work are coffee. After a few sips of coffee, quick check of the gmail, and my day can begin.

Really nothing spectacular. In fact my morning routine probably sounds similar to many of yours.

Are you surprised?

I spend a lot of time trying to convince others that life with a disability is not so bad. In fact I've never known a day without having to use crutches and a wheelchair. My body has always been unique - my short stature, short neck and skinny legs - fit me.

Being born with spina bifida has caused irregularities inside and outside my body. But the condition is maintained. I do what everyone else has to do to keep healthy - take care of myself. I had surgeries on my feet and left leg when I was a toddler, and visit the spinal cord clinic every year. But my health care sounds familiar to others I've encountered without disabilities. It's part of life that we as humans have surgeries or visit doctors.

I was fortunate that I was born with a closed spine and did not need surgery on my back.
I didn't need a shunt, which is common for those with spina bifida.
I have a dimple in the middle of my back - the sign of where the spinal cord has been affected.
I have scoliosis and the curvature in my back resembles a figure eight (x-rays are awesome!).
I have feeling in my legs, feet and have sensation to know when I need to use the rest room.
I can't wiggle my toes and there's a slight numbness toward my rear area.
My legs are weak and I can't stand up by myself without feeling tired after one minute. When I take steps it resembles a child learning to walk and my balance is way off. I can only take one or two steps.

Don't worry I am not in physical pain.

I was diagnosed with spina bifida at birth but I am not my diagnosis. I do not let it disable me from living life. In fact how can you miss what you do not know?

My "normal" is using a wheelchair and crutches. My "normal" is being short in a tall persons world. My "normal" is using hand controls to drive and putting a wheelchair together every time I get in and out of the car.

So the next time you see me, or someone else with a disability, out and about. Don't pity. Don't thank the gods you were born "normal". But realize that we are just like you. Our "normal" may not be the way you view it, but it works for us. See us as human beings.

- Lucia -

Guest Blogger: Denise DiNoto

  “How do you ‘manage’ life as a woman with a disability?”  This question is asked of me at least three times each month.  My initial response is typically, “What alternative do I have?”  I mean – really?  Who else has to answer this type of question?  I have come to learn that the question's source really has nothing to do with me and is often more about the person asking it.  I think the real thought in that person’s head may be:  “I see what you are doing, it terrifies me, and I don’t know if I would have the ability to do it.  If I figured it out, I don’t know if I could accomplish what you do with as much happiness/optimism/success.”  Again I say – really?  I manage because that is my choice.

All of us, no matter our physical ability, are given the opportunity to make choices.  However, as a person who requires assistance from others in order to live independently, there is a critical difference in my choices.   The distinction, for me and others who rely on caregivers or assistants for help with care, is we always make choices or consciously think about things most people never consider.  The able-bodied have the luxury of a life without these choices, a gift taken for granted; and, unless pressed, would never consider these common happenings real choices or decisions.

As an example, each and every day, from the minute I get out of bed, I choose when and how much liquid to consume so I can get through the entire day without having to use a bathroom.  Wheelchair users often refer to this as “pee math.”  Why does this matter?  This one simple choice influences so much of my daily activity and my ability to “manage.”  This choice means I do not drink during the day before 2:00 PM, other than my morning coffee, which I gulp immediately upon rising each day.  It also means the toilet is one of my first stops when I get home from work.  If my personal assistant is late or calls out, finding a replacement worker becomes the priority activity no matter what. 

My entire life is scheduled around when the pee math will become critical.  Those who are able to use a toilet at any location, at any time, without needing another person to make it happen, never worry about whether the choice to have a second mug of afternoon tea was a mistake.  Those who are able to urinate at will never worry about whether the clothes they are wearing could be sacrificed and cut off their body in an emergency if their personal assistant doesn’t show up and they NEED to get on a toilet NOW!  I have indeed taken scissors to my pants in order to get to a toilet before the pee math went beyond critical.

This choice to dehydrate myself daily – a choice many of my friends, family, and healthcare providers do not approve of - works for me.  Rather than spending my lunch break in the bathroom, using a toilet that is difficult for me to access, I get to eat.  That is my choice.  And it really does not matter to me if others do not understand or agree with it.

Every individual adapts to the abilities they have.  They take what they can do and they learn how to make it work, without focusing on what they cannot do.  Rather than dwell on what I am unable to do, I choose to focus on what I am able to do.  This way of thinking makes perfect sense to some, but to others it is quite illogical.

 Perhaps this trait is what makes me remarkable to those who lack the ability to easily adapt to challenges, and those who question me about “managing.”  But adaptation can be learned, and I think given the chance, most would figure it out.  As humans, we have been adapting to various environmental and physical situations over the course of our history.  It is within all of us to choose to make use of what is available to us in our situations in order to succeed.  

Denise DiNoto (Blog: Dee Scribes)