Archives for posts with tag: disability

As often happens, life clobbers me several times in a short period with something I’m supposed to do or think about. This week it’s how we’re all (including me) multi-dimensional.

For one of my book clubs we’re reading Settle for More by Megyn Kelly. Her memoir chronicles her evolution from a hard charging lawyer to a hard charging journalist and then to a multi-dimensional media personality, wife and mother. She glories in all of these roles and believes women don’t have to settle for less than being a success in career, relationship and parenthood arenas, or whatever arenas they want to be in.

At another book club we were discussing a novel An Available Man by Wolitzer with lots of intimate relationships mentioned. The gals in that group did a lot of personal sharing. I didn’t and when one gal wanted to know who had been married before she pointedly did not ask me. She assumed, I guess, that since I was blind, that dimension of life wasn’t open to me. I didn’t correct her partly out of anger and partly out of not feeling comfortable sharing as much as some were. The group knows me as a successful retired professional and disability activist, but not a divorced person.

Lately I’ve read several blog posts by people with disabilities showing vulnerability. One wrote about what if your guide dog looks to you for visual feedback about his/her performance and you don’t see the checking in? Another discussion on Facebook concerned the next version of the iPhone, X, which has a face recognition unlocking feature. What will blind people with artificial eyes do? A blogger wrote about her situation as a person who has multiple sclerosis and needs a good bit of personal care, “should” she become a parent even though she would need more help? Single dimensional Disabled Person who overcomes All Obstacles is giving way to multi-dimensional person with strengths but also doubts and vulnerabilities.

I’m on the cusp of deciding to go talk to my priest about our church’s need, in my opinion, to become more welcoming of people with disabilities. But this will show my vulnerability way more than I have when I read Scripture, serve on Parish Council and help with various ministries.

The first nudge to go talk came from a non-violence workshop that stressed go talk with someone you disagree with and ask them to tell you where they’re coming from before confronting them with your truth. The second nudge came a couple days later from an Occupy Democrats Facebook post of a Christian song, “No Longer a Slave to Fear, I Am a Child of God.”

Do I show the vulnerable, want to be welcomed part of me? Stay tuned and feel free to ask yourself the same question. It’s not all about me!

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For those of you who grew up before the Internet, a life hack is a strategy or technique used to manage one’s time or daily activities in a more efficient way. Think of them as shortcuts or thoughts to live by.  The Internet is full of life hacks for all sorts of folks, so I decided to use this format to bring up some ideas for a Wind Walkers group I guest lecture occasionally.  The group was eight people, middle-aged or better who have lung issues like COPD.  They know each other well, so I did the talk as a group discussion. When we’d get to a particular letter of the alphabet, I’d ask for their ideas, give mine and then play with the ideas raised.  The discussion got better and better as we went along and there was aerobic laughter by the time we reached Z.  You may want to share the blog with a friend for maximum benefit.

Here are the life hacks which might apply to all, but are guaranteed useful to people with disabilities or illnesses:

A: Accepting help (yes, even you!).

B: Be your own best friend or at least treat yourself as you would treat a friend or beloved pet.

C: Cookies, comfort food, chocolate! Making bars is easier than cookies and they get eaten just as quickly!

D: Distract yourself when thoughts get grim.

E: Escape, either literally or with a good book or movie.

F: Talk to a Friend.

G: Use gadgets; your local ADRC and/or Center for Independent Living has adapted ones you can try.

H: Humor. The joke a group member gave was better than mine, so I’ll try to quote it:

An oldster was interviewed by the local news about how he got to be that old and he said it was because he ate a spoonful of gunpowder every day. When he died he left a great legacy of good deeds done in the community and a huge hole in the crematorium!

I: Interrupt negative thinking and substitute “I’m doing as well as I can” thoughts.

J: Find Joy in the little things of life.

K: Keep it simple, stupid (as the expression says) or “short” if giving a sermon or talk.

L: Let go of thoughts about what you used to be able to do…

M: Meditate or pray.

N: Say “no” so you can say “yes” to what you really want to do.

O: Offer thanks at the end of the day.

P: Throw yourself a Pity Party or give yourself a Pep Talk—you know which one you need.

Q: Find a quiet place and use as needed.

R: Read memoirs that are realistic and/or Research new info about your disability or illness.

S: Find Support groups online or in person.

T: Take a nap or a break.

U: Be useful every day or do something useful even if it’s just making your bed.

V: Volunteer—we all have unique contributions to make.

W: Work on your wellness—mind, body, spirit. Design your own program, not what others think you should do.

X: Be an Example and look for people who are Examples you can copy something from.

Y: Yodel, yowl, sing or whistle.

Z: Do Zumba or laugh yourself silly about how you’d look doing Zumba!

 

This dark time of the year, many religious traditions have candle lighting as part of their services. Even though I can’t see the flame, this tradition of bringing light and warmth to people makes a lot of sense to me. I’d like to light a few virtual candles here for some recently deceased famous and not so famous people.

I light a candle for Nancy Mairs. She’s one of my favorite authors with a disability. When you read her Waist High in the World or any of her other books, you meet a bright, articulate and sensitive woman who thinks and feels deeply about her world and her God. An obituary is at: www.nytimes.com/2016/12/07/books/nancy-mairs-dead-author.html.

I’ll light another candle for another author, Luis Montalvan. For those of you who read Until Tuesday by Luis Montalvan about a veteran and his Golden Retriever PTSD service dog. I’m sorry to let you know, Luis died last weekend. His descriptions of PTSD helped me understand it better than anything I’d read in the psych literature. Apparently Tuesday is living with a loving family in the Northeast. More info at the training school www.ecad1.org/Luis.

I’ll light another candle for another Nancy. I became aware of her from visiting her assisted living facility where she and her hearing ear service dog lived. She died not as a famous person, but as someone who brought out a lot of caring from staff and others at the facility. Since few of us know sign and she had trouble reading lips, communication was somewhat limited. But her pride in her pooch shone through to the point of dressing it up with coats, etc. Staff and residents banded together to walk the dog and take care of its needs when she was hospitalized.

I’ll let a young man from a Sunday school class I talked to recently light the last candle. At the beginning of the lesson, somebody else rushed to light the candle because the young man was on crutches from a fall that week. He protested that he could still do it, but others “helped” him by doing it for him. It was a great lead-in for my talk about how to help others without sliming them. I’m assured that after my talk, he will get his candle-lighting job back next week and will get to ask for whatever help he wants (if any) in order to be able to accomplish his chore.

As Eleanor Roosevelt and others have said, it’s better to light a single candle than curse the darkness. Let’s hear it for candle lighters.

In New York, there’s a “Humans of New York” project. A writer and photographer Brandon Stanton has published two books now profiling and picturing “ordinary New Yorkers in the most extraordinary of moments”.

In Eau Claire this year, sixth graders at a local middle school did a project interviewing community members and writing summaries of what they learned from that person. Three university students took photos of each human. The remarkable humans ranged from a nurse to a soldier; from a jump roper to a turkey caller; from a CSA farmer to a yoga instructor; from a couple who got a wheelchair made for their Lab who was paralyzed so he could keep moving to a couple who run a shelter for senior dogs. A young man who is Deaf and is in school to become an architect or engineer, someone with Asperger’s and I represented people with disabilities active in the world.

Remarkable Humans picThe coaching and teaching that helped these sixth graders research their human, dream up good interview questions and do the write-ups was amazing to me. Several of the students read part of the welcome speech at the celebration event. I got to meet one set of parents of one of my interviewers and hear from them how appreciative they were of the great education their child was getting in our public schools. I’ll go to sleep smiling tonight thinking that someday this city and this world will be run by kids like these. Remarkable humans are all around us.

Want to go beyond “nice” to be an awesome ally for people with disabilities?  Consider some of the following moves:

  1. Dig deep; don’t take news reports of cures for disabilities or technological fixes for disability issues at face value. Sometimes a press release about a cure being just around the corner means the researchers need more money. Recently Facebook trumpeted that they would label pictures with captions describing them. Labels say things like: “may be a person”, “may be outside”.  That’s mildly interesting but it might be good to know if it was the Mona Lisa or Adolf Hitler!  Ask people with disabilities what they think of the new cure or technological fix before getting too excited.
  2. Listen to what words you use to describe people with disabilities. You may be a caregiver for a person who has Alzheimer’s, but you are not a caretaker. They are not property! Comments I hear like a recent one from a good liberal exhorting people to do something “unless you’re in a wheelchair and can’t do anything” are not meant but are said.  Our language is full of slights like “I’m so blind!”, “That’s really lame” etc.  The only way I know to change the stupid things I say is to listen for them.  Maybe some kind soul will tell me, but living in the Midwest they may be too polite to do so.
  3. By all means offer help to anyone whether or not they have a disability, if it seems like they need it. Then listen carefully to their response and act accordingly. “Are you okay?” is not an offer; “May I help?” is.
  4. Offer to do things with us not for us. The company is appreciated as much as the help.
  5. Get to know us individually. The initial encounter may well be awkward—push on through. If you just know someone with a disability well enough to call them “inspirational”, you don’t really know them. Just like you, they may be awesome, inspirational or just plain dull at any given moment.

One out of five people, or one half of people over sixty-five has a disability. Do your friends reflect those statistics?

  1. Work to be accessible yourself. Write a few words describing the picture you tweet or Facebook. Arrange your next party in a wheelchair accessible venue. Get in the habit of thinking “if I had a friend who was blind, deaf, or used a wheelchair how would I accommodate them?”  Those aren’t the only disabilities in the world, but they’ll start your thinking.  The more you think about that question, the more likely you are to make a friend with a disability.

Our radar tells us when we’re near potential awesome allies. 🙂 (Grinning face icon!.

I was emailing with another blogger about what picture to use to represent a blog we were writing together. Somehow she (who is partially sighted) challenged me to come up with a picture that could represent a nonvisual example of perspective.  I suggested “a picture of someone in Wisconsin wearing shorts and someone in Florida wearing a winter coat with a sign saying “Fifty degrees F; it’s a matter of perspective.” I began to notice situations where a blind person’s perspective on a situation was radically different from a sighted person’s perspective. Examples follow.

This week, with a good bit of fanfare, Facebook announced that they were automatically captioning pictures that people post, so they’d be accessible to those of us who are blind. I eagerly checked my Facebook feed, which I’d swear is about 70% pictures. The automatic captions were like the following: “May be a picture of a person indoors”. “May be a picture of outdoors”. Now that is amazing, I agree that a computer can recognize pictures of objects and decide if it’s inside or outside, but it’s not a real game changer for me. I will still bug my friends to caption their own Facebook offerings with “beautiful sunset on Lake Superior” rather than their usual “Wow, look at this.” It’s all a matter of perspective, Facebook is quite pleased with themselves; I’d give them one star out of four.

Second example of perspective: Freading got back to me about their app not working with voiceover. They said thanks for the idea and we consider your case closed.  They’d heard my idea, probably passed it on to somebody in charge of keeping a list of good ideas and considered it settled. I want to read a Freading book and can’t using voiceover on my phone. For me, it won’t be done until I can read that book.  So I contacted the library access person who will contact Freading and see if as a purchaser of the software, the library gets further in requesting access. Another one star out of four from my perspective.

Frequent discussions in the disability communities where I hang out electronically involve what to do about able-bodied people calling us “inspirational” for all the wrong reasons: like how well someone uses a power wheelchair, instead of how qualified they’d be for the job they’re interviewing for. Disabled community reaction of irritation-rage; able-bodied community reaction of awe at the little things and hurt if irritation is expressed. This week I had this experience when I read a prayer out loud from a braille copy of a book and someone asked me to do it again next meeting because it was “so powerful” that I could read.  My irritation was aroused but I knew her well enough to know she meant no harm. Since I’d asked her to read several times, I just said “I guess it’s fair for you to ask me to read.”

Note to self after all these ruminations about perspective: next time someone pisses me off, perhaps I should put a lock on my mouth until I put myself in their shoes for at least ten seconds. Could be a lifesaver as the political season drones on!

 

 

As I was growing up, I frequently was told “Don’t act blind.” That meant don’t reach out to feel things and don’t exhibit blindisms like rocking back and forth or putting fingers in your eyes. People avoid using walking canes, hearing aids, etc. because they’ll look like they have a disability. The book How Not to Act Old, although partially tongue in cheek, also gives much advice. Topics include what to talk about, what to not talk about, including your chronic health concerns, what to wear and what kind of pet to have. All this avoiding of looking disabled or old assumes it’s bad to be old and disabled. I disagree!

George Schofield wrote about the same issue in a recent Next Avenue article:

“I already wear hearing aids to help with mild loss. Now I have fallen. If more age-related issues start stacking up, will people stop taking me seriously or question my competence?”

A blogger from www.assistiveware.com offered this guideline among others for Autism Acceptance Month (not Awareness Month):

“We want to live well, not become normal. Many autism interventions focus on making autistic people look more like non-autistic people. Common therapy goals. Include increasing eye contact and reducing unusual movements.

These aren’t priorities typically selected by autistic people ourselves. More common priorities include reducing the impact of some of the downsides associated with autism, such as anxiety and sensory hypersensitivity; learning skills needed to succeed in education and find employment; and accessing supports and accommodations to assist with daily living.

There may be intolerable costs associated with a focus on achieving an appearance of normality. Eye contact may feel painfully intense and intrusive, or it may be impossible to simultaneously make eye contact with someone and understand their spoken words. Staying still may require a vast amount of attention, leaving little left for learning. Hand-flapping may be an expression of joy, or a way to regain a sense of where one’s body is in space.”.

Another way to view these outward signs of disability and/or aging is as points where we can take the hero’s journey and face our greatest fear. So I appear old, blind, mobility-impaired, so what!

In Disrupt Aging: A Bold New Path To Living Your Best Life At Every Age, Jo Ann Jenkins talks about making realistic choices as aging happens and figuring out how to do what’s important instead of succumbing to the “I’m too old for that” agist attitude so prevalent in our society.

It’s about owning the disability and actively working to meet one’s needs, not hiding or denying it. It reminds me of the Japanese art form kintsugi where gold dust mixed with lacquer is put in the cracks of a broken object. As a philosophy, it treats breakage and repair as part of the history of an object, rather than something to disguise.

Poet E. E. Cummings said: “To be nobody-but-yourself — in a world which is doing its best, night and day, to make you everybody else — means to fight the hardest battle which any human being can fight; and never stop fighting.” Or, as Dr. Seuss said: “Be yourself because those who mind don’t matter and those who matter don’t mind.”

I just finished reading A Step Toward Falling by Cammie Mcgovern. It’s a young adult novel about teens with and without disabilities trying to navigate hard situations including regrets, forgiveness, and trying again. Most of all it’s about the angst of rejection and being who you are anyway. The author gets a lot of the disability pieces right, sitting alone at the lunch table, trying to figure out if the non-disabled person is being truly friendly or patronizing, etc. There’s no quick fixes or happy ever after endings.

As I read it I remembered the loneliness of high school broken through by a few good friends. The book makes the point that that is a common experience because of rejection or feared rejection because of characteristics like being a jock, a nerd or having a disability. Teens reading it will be a bit comforted by knowing they’re not alone.

I’d like to write an epilogue reassuring the teen readers that It Does Get Better. As I set forth into a week of guest lectures, meetings, book clubs, meals with friends and a bridge game to keep me humble, I know I am useful and beloved in my world. Yes, it’s a struggle and sometimes I don’t feel the love, but it’s there. I noticed that one of the 2016 American Library Association Schneider Family Book award winners, The Unlikely Hero of Room 13B by Teresa Toten is dedicated to people who feel different knowing they are not alone.

The ending of this poem, “The Laughing Heart” says it better than I can:

your life is your life.

know it while you have it.

you are marvelous

the gods wait to delight

in you.

—Charles Bukowski

I despise asking for and taking help. Having been blind since birth, you’d think I’d be an expert in accepting help (at least disability-related help)! If you define expert as someone who’s done something often and thought about it a lot, then maybe I am. I did my dissertation study on altruism and a friend made me a wall hanging with “ask” spelled out in braille on it.

However, I’m definitely one of the 70% of people that an executive coach, Nora Bouchard, says could have used help in the last week but didn’t ask for it. As I age and watch friends age and need more help, I think it’s time to turn the spotlight on the fine art of asking for help and maybe rearrange my attitude a teeny bit!

Why are we so reluctant to ask for or even accept help? Pride? The myth of “I can do all things”? Shame when we can’t? Fear of being slimed by patronizing help? Fear of losing control? “More blessed to give than to receive” rings in our ears? Difficulty articulating what we need? Fear of getting “help” we don’t want along with help we do want? All of the above!

It’s easier for me to ask or accept help, if I know I have something to trade, know the giver well enough to know they’re not looking down on me as they reach out, knowing someone else is depending on me to accomplish this chore, or if the ask is a small one.

Using Bookshare, www.bookshare.org I was able to skim through hundreds of books with “help” in the title. Lots of self help titles promising help for everything from training your dog to taming your fears. The three I found the most helpful with their foci on the asking part of the process were:

  • Help Thanks Wow by A. Lamott
  • The Art Of Asking: How I Learned To Stop Worrying And Let People Help by Amanda Palmer and Brene Brown
  • Mayday: Asking for Help in Times of Need by M. Klaver

Amanda Palmer is a musician and a performance artist who espouses radical openness in asking and giving help. She’s crowd-funded her recordings and tweeted her fans for all kinds of help for herself and others. She shares her struggles with asking and taking help particularly from her husband. A good read if you’re wanting to be inspired!!

Anne Lamott writes about prayer in such a funny, realistic, approachable way that you hardly realize you’re doing “spiritual” reading. Her first prayer is “Help” which is a great reminder to me that asking my Higher Power for help could be a great place to start!

The Klaver book breaks asking for help into a seven step process. The seven steps are:

  1. Name the need
  2. Give yourself a break (self-compassion and believing you deserve it)
  3. Take a leap (revving up your confidence and faith)
  4. Ask!
  5. Be grateful and gracious whether request is met or not
  6. Listen differently to what you get
  7. Say thanks

Inspired by my reading, I asked my Facebook and Twitter followers for their top tips for how to ask. I got several great replies which tells me I’m not alone in this struggle. Here are my tips from one struggler to another:

  1. Figure out what you need exactly.
  2. Remind yourself you’re not alone; half the people over sixty-five have a disability, so will need disability-related help.
  3. Remind yourself that even Jesus asked His disciples to wait and watch with Him.
  4. Remind yourself that you’re giving a gift by letting yourself be helped because people like to help and somebody has to be the receiver! It’s your turn now!
  5. Reframe (at least in your own mind) or offer a trade: “If you give me a ride, I’ll buy you a cup of coffee”
  6. Strategize how that person can probably most successfully meet it. For example, “point my finger toward the bank building” rather than asking “where is the bank?” and them pointing or saying left when they mean right.
  7. Say a happy “thanks”, not an apology for the need but a strong thanks for meeting it.
  8. Keep helping and asking so the balancing act can go on between helping and being helped.

What you (when you’re in the role of the giver) can do to help:

  • Offer help freely “May I help?” rather than “Do you NEED help?”
  • Point out that you benefit from my company; e.g. “I have to go and would like company. Want to ride with?”
  • Listen to what I ask for instead of dishing out what you think I need.

The Mighty website, www.themighty.com has received some negative press from within the disability community in the last few months. The website describes itself as “Real People, Real Stories We Face Disability, Disease and Mental Illness Together.” It’s been critiqued for parents oversharing about their kids with disabilities (photo of a teen in diapers, etc.) and some posts painting parents as heroic and people with disabilities as cloyingly inspirational. Also bloggers who have disabilities have reported having their posts removed or not used. On the other side, parent posters have felt scolded by people with disabilities. If you’ve missed this tempest, a good post to read about it is “Who Should Speak for the Disability Community?” at http://wordsiwheelby.us3.list-manage.com/track/click?u=9334e4131b35335c80067007d&id=fa86b62a58&e=90b8279ff5.

I’m troubled! It reminds me too much of Congress; groups of people fighting each other and ending up in gridlock instead of working together on things they can agree on. To me, the answer to “Who should speak for the disability community?” is each of us who is touched by disability, whether it is ours, a family member’s, a friend’s, etc. Since one out of five people has a disability and one out of four families has a family member with one, there are a lot of voices.

I hope it’s a chorus where all are welcome. Having lived through fourth grade music where the teacher told me not to sing, I don’t wish to silence anybody! You might sing in a different key than I do—go for it.

The hardest part of this “all are welcome” approach is when people try to say one writer is righter than another. I’ve seen this argued in the blindness community with regard to dog vs. cane, braille vs. large print for partially-sighted, two competing consumer organizations, etc. My usual answer is “both and” or “it depends.”

I hope the editors of The Mighty are big enough to publish many viewpoints, some of which may conflict. I hope those of us in the disability community can disagree with each other respectfully, assuming the other person’s view is right for them, even if not right for us. I hope we can ask each other questions to better understand each other’s view, without having it perceived as arguing or judging.  Let’s work together for better services, more public understanding and fuller inclusion of people with disabilities in the good life. Congress, watch us!