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Monday, December 15, 2014

Is "Disability" a Bad Word? (Thoughts from ABC's 'What Would You Do?')

When I discovered the show, "What Would You Do?" I was thrilled. I flipped through one YouTube video after another, watching actors portray moral dilemmas in front of bystanding people who did not know that the situation was set up. There were drunk dads about to drive with a van full of kids, seemingly drunk women alone at bars, staged drug-slipping, a theatrical (but eerily realistic) kidnapping and people who seemed to have disabilities that needed help. The idea is to see who would respond out of all of the bystanders and who would speak up or try to help. To change the variables, WWYD changed the gender, race or age of the actors and repeat the skit. It's a very interesting show. It airs on ABC, but episodes can be found on Hulu and YouTube.

One episode that particularly stood out to me was one that involved an actress with a speech impediment that was taking orders at an ice cream shop. Some bystanders were impatient with her delayed speech, although most were very understanding. WWYD planted a few actors to act as impatient/ bullying customers to see how bystanders would react to the rude customer in line. (The roles are flipped a couple of times, with the actress as the customer and vice versa)

At the end of the show, it was revealed that the actress truly did have a speech impediment. However, she wanted to correct anyone who thought she had a disability. "It's just part of life," she said.

I have heard this sentiment a lot. When I read Bethany Hamilton's book "Soul Surfer," she commented that, "I am living proof that there is no such thing as a disability." Although those words are a crass over generalization of what other people experience, Bethany Hamilton did have her arm amputated by a shark and got right back into professional surfing. I'll give her a pass.

I can't judge. I know why people want to eschew the label of "disability." Just look at words like retardation, invalid, (We pronounce it like in-vuh-lid, but just look at the word in print) and handicapped. These words are so often used as an insult in media, and "disabled" is turning in to one of those words that no one wants to use to describe themselves. When we break down the word, "dis-able," the word does start to sting a little bit if it we to be used to generalized to the worth of a person's overall contribution to the world.

However, isn't over generalization the problem in the first place? Someone can't do one thing, so others assume that they can't do anything. I feel like what a person is or is not able to do should not define the value of their lives. Whether or not someone has a disability, there are plenty of things that we can and can not do. Just because I can not run the Pittsburgh marathon doesn't mean I'm a no-good person, and I would be no less of a person if I could not walk a single step. (I suppose this is where the word, "differently abled," arose from; but just give it five years because the mainstream culture will find a way to abuse the term.)

Although most people find a way to rationalize offensive words, (Such as misusing the word, "retarded," "psychotic," "special," etc.) I ask that they consider the impact that they have on people with disabilities. It would be a small change in vocabulary for one person, but for other people it can make a tremendous difference in terms of their workplace or social event feeling like a safe place. Words are not the only way people with disabilities are often alienated, exclusion from important opportunities "because they probably can't participate" is another way people are unintentionally mistreated. It's important to remember that people with differences in ability are painstakingly aware of their limits. If they are invited to something that they can not participate in, they will politely decline just like anyone else.

People often think that, when people with disabilities are alienated, belittled or mocked, the person with the disability is robbed of participating or contributing. This is very true, but this is not the only loss. When people alienate those with disabilities, they are robbing themselves and the community of an individual that has a lot to offer.

I respect anyone who does not want to think of themselves as having a disability, but I think that the intrinsic value of every person needs to be understood. Coming up with a word to replace disability might help, but it will only work if the mainstream culture stops verbally abusing people with different abilities. Ability or the lack of aside, race aside, gender aside, privilege and the lack of it aside... every person is valuable and important exactly as they are.... with whatever label they use to describe themselves


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Before I log off, I would like to leave you with this excerpt from an interview with Special Olympics chairman, Timothy Shriver on NPR.

"Bill Clinton arrived and one of the professional photographers saw a group of Special Olympics athletes and noticed that they'd each had their little single-use cameras that they'd been given and they were trying to get a picture of the president, only they all had their cameras backwards. And he said to them, you know, you have to turn your camera around and then you look through the viewfinder and you click the button and you'll get a picture of the president way up high and the athlete, one of them turned to him and said, oh thank you so much, he said, but if you look through the viewfinder backwards it works just like binoculars and you can see the president perfectly clearly."

Saturday, December 13, 2014

Coping with Chronic Illness

Living with chronic disease can be very challenging. Just imagine all of the symptoms that you had the last time you had the flu, (give or take a symptom or two) and imagine that you have to live with that every day for months or years. If you are reading this and you have a chronic illness, you don't need to imagine- you are living in it.
After living with a smorgasboard of illness that debilitated me to a wheelchair for three years of my life, I have come up with a few things that have helped me cope and carry on.

"Chronic" does not mean the same thing as "Permanent"
We tend to use the past to predict the future. If things have been a downward spiral so far, we can just assume the trajectory is going to be the same. Chronic disease can affect someone for a few months, a few years or possibly even a lifetime. It can be helpful to maintain hope that the symptoms will someday become manageable or that the disease will someday be reversible. Medical advancements are improving every day, there is more scientific knowledge about self-care and disability equipment keeps getting better and better. When I have had the attitude that "my life is a downward spiral," or "when one thing gets better, another thing gets worse..." I lose the ability to appreciate the things that I am able to do. There are no guarantees about the future, but it's okay to hope for a slightly better one than we have today.

Finding something that I as able to do and could get excited about

I found a lot of comfort in painting and singing, even when I was so sick that I had a difficult time with hand tremors. (Abstract art is in!) Before I was ill, I did a lot of active things and spent most of my time outdoors. It was really difficult to switch gears and find new hobbies, but it was a really important part of my self-care. Making art helped me get through those tough years with my sanity in tact.
For me, other people helped me find things that I was able to do, because I really had a bad attitude and thought there was nothing left. My grandma showed me how to container garden, (since I could reach the containers with my wheelchaire) which quickly grew into bigger and bigger projects that I felt excited about.

I had a physical therapist once who told me that he had an elderly client that often complained about "Only being able to walk to the mailbox." He asked her, "Well, do you walk to mailbox?" and the woman essentially told him that she just stayed in her chair, because she felt like it was so pathetic that she could do so little, why try. I know that feeling. However, learning to do as much as we can without overdoing it is a great step toward more independence and better mental and physical health.


Finding a purpose

Helping at my church really gave me a sense of sanity when I was really ill. I couldn't always help as much as I wanted, but reading a story to kids at VBS or handing out flyers for an event made me feel purposeful. Although I couldn't empty the dishwasher or run a load of laundry, I found ways to help around the house with my family that helped me feel like a contributing member. The trick with finding purpose is knowing one's limits and not overdoing it to the point of wearing ones self out or having increased pain.

Getting out of Sick World

There is a whole world on the internet where sick people comiserate with each other and talk about their illnesses. There is nothing wrong with visiting these spaces and giving or taking advice to/from other people who are going through the same thing; but don't live there! It's an easy trap to fall in to, as there suddenly are a thousand people to talk to who are going through the same thing. However, it can really set a recovery up for failure. If being chronically ill gives someone a sense of identity, how would they ever recover! Psychology is not just in our minds, it affects our bodies as well. Our thoughts send messages to every cell in our bodies, so mindfulness is very important. Venting about the illness is good every once in a while, but I personally have found that seeking things that make me feel healthy is much more productive.

If you are interested in more about this, visit Psychology Today for more information about the Mind Body Connection.

Self-care

Eating well, resting, exercise and proper hygiene are important no matter who someone is or what their challenges are. If these things are too daunting, it's really important to not be hard on ourselves. There are a lot of options for people with illnesses and disabilities. From consulting with an occupational therapist to getting a home health nurse, there are a lot of resources to help one meet those needs.

Additionally, I've found that it is really important to ask for help when I need it. No one could read my thoughts, but there were times when I really needed something and was hesitant to ask. However, I have found that more people are willing to help when there is a need than can be imagined- so there is no harm in asking. Just to be polite, it is probably better to ask a lot of different people for that ride to the doctor's appointment or help cleaning the house. People want to help, but they burnout when only one person is doing all of the helping. It's always nice to think of a way to thank friends and family that offer assistance; a thank-you phone call, a handwritten note or a small gift are nice gestures to show that they are appreciated.

Manage stress

Being sick was stressful- and not just to me. It was stressful to all of the people who were taking care of me. The trouble is, the effects of chronic stress can make a lot of illnesses worse, disrupt the healing process and even cause a stress-related disorder to develop. (Just a wild guess, but maybe that's why people with chronic illness tend to have four or five different diagnoses) Managing the stress is really important.
I went to an occupational therapist once who taught me how to do deep breathing and relaxation. I was connected via heart monitor to a biofeedback machine, where I could see in quantifiable numbers my oxygen rate increase and blood pressure decrease. It was a great tool to give me faith in relaxation. I didn't need the biofeedback machine to do relaxation after a while, though. My mom helped me make a habit of doing my relaxation every night.

Seeking counseling or some sort of support can also be helpful, as they have a lot of tricks up their sleeves on how to manage stress.

Also, staying organized is a great way to cut down on stress. You know that stress when you're looking for your car keys and your heart is racng because you're running late and all of the blood is rushing to your face in a panc? Yeah, me too. Just imagine if you are having an asthma attack and looking for that inhaler that you use only occasionally. If I keep the important things (medical equipment, epipens, inhalers, medications, doctors notes etc.) in a designated place; then the only stress will be that I need to use those things, not that I can't find them.

Take Things One Day at a Time

Like I said before, there are no guarantees about the future. Fretting about "what could go wrong" or "what if..." does not help anyone get through the day they are currently living in. Planning for the future but paying the most attention to the specific day one is living in is a really helpful way to curb the anxiety. Focus on self-care for the day, there is no need to worry about "how on earth am I going to do this again tomorrow?" because tomorrow is a long ways away, and maybe it will be just a tiny bit better.