AbleBodies

Gratitude

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. 

 

Thank you my Family and Friends!

 

- Elizabeth -

Giving Thanks

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.

-Brandon-

 

What's a Personal Care Aide?

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.

- Elizabeth -

Dear Facebook Diary

Day 182
Wednesday, November 5, 2014

Dear Facebook Diary,
"My Able Bodies Buddies"

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. 

- Roel - 

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

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

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)

The Self-Esteem Factor

Self-esteem is something many people struggle with on a daily basis. Some folks are paralyzed by low self-esteem and it affects every segment of their life. Others feel that self-esteem plummet under specific circumstances.

As a kid growing up, I suffered from low self-esteem. I was (and still am to a greater extent) a nerdy-looking person. While I don’t particularly care anymore about this, as an awkward kid attending school in a rough small town like San Diego, Texas, it can hit home. And someone like me is easy pickings for the other group of kids with low self-esteem: the bullies.

Never one to belong to the popular crowd, I blended in and was one of those kids who got by. People knew me because the school district was small, but I was hardly a blip on the radar. I was the shy, introverted kid, who said little, even though I wanted to speak up. But that just never happened.

As I got older and entered junior high, life got a little tougher. I started noticing girls and how “hot” they were. Hormones are raging and voices deepening and it’s a natural thing to want to, well, mix with the opposite sex. Looking back, it was an epic fail. Never a date or anything. I never got the guts to ask a single girl out on a date.

Looking back, my awkward nature and inability to simply walk up to a girl and ask her, “Wanna hang out?” just wasn’t in the plan. There was a deep understanding that I’d be shot down, laughed at and ridiculed. So I admired from afar.

But this self-esteem issue goes much farther than simply not asking a girl on a date. I joined no extra-curricular activities or sports. Many of my friends started football or basketball or joined UIL. Not me. Was there a want to join activities? Yes, but the want is as far as I got.

High school, which can be the black hole of existence, saw me head into an interesting direction. If classmates look back and think about how I acted, most would say I was funny or did outrageous things.  A few years back, one classmate even said I was the cool dude who stood off by himself who didn’t care. Interesting observation but clearly incorrect.

The humor I used during high school was a mask. Most people walk around with one, two, three or more masks to cover up true feelings or to make themselves feel better. My humor was my mask covering up my low self-esteem.

Entering high school, I was considered a nerd, picked on by the upper classmen, pushed around in the hallways and belittled whenever the opportunity presented itself. But after issues with my vision, where did that leave me? Nowhere but down. On top of having the stigma of being a nerdy guy, I was now the nerdy “blind” guy.

To compensate? Let’s have a laugh fest at my expense. It seemed the only way to cope with how shitty I felt. I got laughs and laughs, in my mind, equaled acceptance. I wonder now how many of those laughs were at my expense? I wager that most were aimed at me and not with me.

While I went through high school, I wore that jester’s mask and played it to the hilt. Behind that mask was a teenager who felt isolated and alone, never quite fitting into situations and most company.

It’s only now with a couple of decades of perspective that I see all this. Perspective is great. Too bad it most always happens way after the fact.

And these days, you ask? My self-esteem is better. I am confident in most things I do. Do I have dips in my self-esteem? Sure. Doesn’t everyone? Except these days I shrug off those moments because I have a little thicker skin. 

- Roel -