Archives for posts with tag: disability

As I begin my 70th year, I’m feeling an urge to do things to get ready for the next decade. The first of these is to focus on the daily (hopefully) bright spots in life.

This idea was reinforced for me by a Facebook post by Shane Burcaw. He’s a young man in his ‘20’s who has spinal muscular atrophy, website He posted a week of things that made him smile.

Here’s mine for my birthday week:

Birthday: Cards, calls, meals with friends, useful presents like a new pair of jeans and chocolates to share at bridge.

Day after: Call promising to visit in the summer. I like the celebrating to last a long time, but this may be a personal record if she visits in July!

Birthday plus 2: Luna’s nose led her and subsequently me to a missing bag of groceries. Unfortunately the frozen fish was no longer frozen and could be smelled three feet away so had to be pitched. But the nose knew! As they say at the Seeing Eye, “Trust your dog!”

Birthday plus 3: Meeting with my Methodist ladies book club, aged 69-90-plus reminded me of the truth of this quote:

“Cherish all your happy moments; they make a fine cushion for old age” Booth Tarkington

We laughed and grumbled about the weather and life in these times. We agreed to pray for missing members’ health situations, even though they didn’t want us to worry about them. We drank coffee and ate donut holes. We even talked about books (but not much).

Birthday plus 4: Someone I know is writing a Federal grant and asked me to be part of it if it gets funded. It’s due pretty soon, so I suggested to her that she send the text of it to me by my birthday as a present. She did and I received it as probably the oddest present I’ve ever gotten. Candy, beer, clothes,…and a grant proposal to review!

Birthday plus 5: It’s National Pets Day and Grilled Cheese Month, how much better could life be?

Birthday plus 6: Lecturing an eight AM business diversity class I got the following questions among others: Do you like to feel faces? Is it hard to start working with a new dog? And where can’t service dogs go? To this last I said I didn’t take the dog into the procedure room when I have a colonoscopy and then explained what that was. I think based on their gasps these young people may be okay with disabilities but getting old enough to have a colonoscopy not so much!

Your challenge, should you choose to accept, is to do a week of jotting down what made you smile each day. I’d love to read it! Might even make me smile!




Recently I got to talk to five groups of high school students, some of whom were receiving special education services about adulting with a disability. I first asked them what makes an adult? Most thought it was more than an age number but included responsibilities like paying taxes.

I then went on to talk about the realities of living with a disability as I see them:

A: You have to ask/advocate for what you need.

B: There’s a bubble around you, particularly if it’s a visible disability. Reach through it!

C: It costs more in time, energy and money to have a disability.

D: You will face discrimination because of your disability.

E: A disability is an everyday part of your life. Keep your reserves up.

F: Find the pearls in the disability experience.

I then gave them my rules for Adulting with a disability

  1. Life tasks take longer—plan ahead!
  2. Try new things.
  3. You don’t get everything you want, but you do get to make choices and clean up messes.
  4. Mistakes are good teachers.
  5. Show up when and where you said you would.
  6. You have to train allies/helpers.
  7. When facing a conflict, work for a win/win.
  8. Team work rules!
  9. Play is important, but after your work is done and within your budget.
  10. What kind of a person do you want to be?
  11. Believe in yourself and have high expectations for yourself.
  12. Have three “G”’s in your attitude: gracious, grateful and giving.
  13. Asking for help is a sign of strength.
  14. Look for the pearls.

The questions were thought-provoking including what’s the best thing you’ve ever done. I was practically speechless by the time I left the school. How do teachers talk all day and still have a voice in the evening? Of course Luna was ready to do it again the next day because she got petted by five groups of wonderful young people.

If you’re interested in knowing the answer to that question, you’ve taken step one in getting rid of the ableism we all have grown up with. Ableism, like racism or sexism, means considering people inferior because they belong to a particular group, in this case people with disabilities. The judgments of inferiority are based on stereotypes and can limit an individual’s opportunities. When it’s widespread and institutionalized it can lead to eugenics, euthanasia and selective abortion.


Some examples might include:

  • Commenting to a friend with a disability “I don’t see you as disabled”
  • Not providing sex education materials in braille because blind children wouldn’t need that
  • Not routinely providing dolls with disabilities in daycare centers
  • Not inviting a member of a coffee group to have coffee anymore after they’ve had an accident and have a brain injury
  • Not bringing a family member with dementia to church because “they won’t get anything out of it”.
  • Lack of portrayal on television and on screen of disabled roles by actors with disabilities
  • Media portrayals of people with disabilities as superhuman/inspirational, as objects of charity or monstrous (particularly around Halloween)


Long-term consequences of ableism include high unemployment and poverty rates for people with disabilities. Society also loses out on individuals’ gifts because they’ve been shunted aside on account of their disabilities. Ableism also leaves people without disabilities with a lot of fear about what if that happens to me?

The first thing to do about ableism is look for it in yourself and others. Congratulate yourself when you say something ableist and a friend with a disability challenges you. Then work to rephrase it. “I’ll pray that God gives you back your sight” could be rephrased as: “May I pray for you in some way?” “I’ll help you” can be rephrased as “May I help you?”

It’s always more fun catching and correcting others’ comments, but saying “sorry” and working to rephrase one’s own is more productive. After all, each of us spends 24 hours a day with ourself, so self-improvement can be worked on any time.

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!

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:

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

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 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.”