Archives for category: Aging

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.

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When I was out talking to journalism classes at Arizona State this week, before presenting the NCDJ awards, I talked about finding stories and/or finding disability angles for stories. For example, I’ve seen no stories in mainstream news outlets about the disability angle on what a bad thing it would be to get rid of net neutrality. Those of us who can’t shop independently at a bookstore, for example, can shop online if the websites are screen reader friendly. Deaf people who rely on video relay services online need the Internet to be just as fast for this as for streaming of content from some big telecom company.

The more I thought about it, the more determined I became to see the disability angle covered. So I contacted libraries and other advocates for net neutrality and some media outlets in my state. So far all I’ve scored is an article in an online local paper http://cvpost.org/net-neutrality-principle-serves-libraries-disabled-population-democracy/ There’s about ten more days to fight the roll back—I’m not done yet!

On another visibility front, Just the Right Book Podcast’s independent authors poll is now live on their website at bookpodcast.com/poll

With the millions of books published every year, how can anyone learn what’s good? Unless one has the name recognition of John Grisham or the publicity budget of Bill Gates, one must rely on book reviewers and friends telling friends.

Here’s where you come in! If before December 15, you can give my Occupying Aging: Delights, Disabilities and Daily Life a vote, I’d appreciate it. If it wins, it’ll be reviewed by Just the Right Book podcast and more people might read it. Even if it doesn’t win, you now know about a good book review podcast and they’ve done independent writers a service by featuring one book not published by a major publisher. go to the website www.bookpodcast.com/poll to vote.

On a lighter note, I’ve volunteered to write letters from Santa in Braille for our public library and this is duly noted in their publicity. It’s stated as “letters in English, Braille or Spanish are accepted” implying Braille is a language, but at least it’s there.

Three cheers for those giving a boost to disability issues and stories and to those who listen!

My biggest learnings were about how hard it is to transition a program you run to others who may or may not want to do it and definitely will do it differently.  The transition of the pet food program described below in a column for the local paper was in the works for a year. Sometime you may need to hand off some of your projects that you care too much about to just say “bye” when you’re done. Plan way ahead, be willing to compromise and celebrate if it happens are my best nuggets of advice.

 

After thirteen years of monthly deliveries, the We All Love Our Pets program will end in December. It has provided monthly deliveries to elderly and disabled people with low incomes, under the auspices of the Eau Claire County Humane Association. Over the years the program has grown from five households to thirty-five. Tons of cat litter, cat and dog food and food for a few parakeets and a guinea pig have been delivered. Our team of volunteers has been like the Postal Service, through heat, cold, snow and ice, and car trouble the deliveries have gone on. We’ve mourned the passing of a few of our human customers and some of their pets, but have also rejoiced at the new pets that have entered the life of an elderly or disabled individual.

Our sponsor, the Humane Association of Eau Claire County is initiating a new program where individuals can stop by the shelter and pick up the food and litter they need. This will meet the needs of many of our current customers and others not currently on our program with much less need for volunteers. My volunteers and I are getting older and needed to transition the program to something different before anybody broke a leg and everything fell apart. I’ll miss my volunteers, the customers and their pets.

It’s hard to put into words what I’ve learned over the years from the volunteers, customers and animals, but a few things stand out:

  • One can be happy without being well off financially. A homeless man who dearly loved his dog and rejoiced in their adventures together exemplified this.
  • One can be generous, even if one doesn’t have much. Most of my customers helped out in the community somehow, watching their grandkids, volunteering at Community Table and even handing us volunteers a home-baked goody from time to time.
  • People are resourceful and resilient. Volunteers borrow a truck when theirs breaks down. Customers take care of each other’s animals when someone has to be in the hospital.
  • Volunteers who show up, do the job and have fun doing it are a joy! We’ve laughed and cried with our customers, prayed for them when asked and celebrated a marriage, a move, a new pet and milestone birthdays.

I hope that as the We All Love our Pets program ends and the Community Pet Food Pantry program begins our donors and the public in general celebrate with us the fact that in Eau Claire we do love our own pets, as well as the pets of those who are elderly, disabled and low income.

Blind people like to game too, but most mainstream games like Tetris and words with friends are inaccessible. Four years ago a developer Marty Schultz started developing Blindfold Games and now has over 80 games at the Apple store. www.blindfoldgames.org 8,000 copies of Blindfold Bowling have been downloaded, for example.

This week he was told by the Apple store he couldn’t market these games anymore but must crunch them down into a few apps. This would take a lot of work for very little profit. Blind people would lose the fun of gaming like their sighted peers enjoy and teachers of the blind would lose a fun way to teach their students how to use their iPads and iPhones.

As the developer’s blog made the blindness community aware of this horrible situation, advocacy efforts sprouted like mushrooms. Many posted their dismay on social media. An unknown number emailed or called Apple’s accessibility line. I contacted several reporters on the tech beat hoping to get the story out to the sighted world, but none responded.

But somewhere, somehow, something got to Apple and they changed their minds! In addition to celebrating the win by playing a few rounds of blindfold bowling, I’m wondering how to get Apple to give this developer an award. There are many more lucrative venues he could be marketing to, but I think he should be publicly thanked for making sure blind people can enjoy the fun of gaming too. If you have ideas, please let me know.

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.

At my age I’m having more and more friends encountering new disabilities or watching their spouses face a new disability. Sure it happens to half the people over sixty-five, but we never figure we’ll be in That Half! That statistic about HALF is why I wrote Occupying Aging, but not everyone has the inclination to read a book early on in the disability journey. So here’s a free sample of a little advice email for the person with the new disability and for the spouse. First I sympathize/empathize and then ask lots of questions about their diagnosis, treatment, etc. Then on to the advice labeled as free and worth what you pay for it. I’ve made these emails generic enough that even if I don’t know you, it might resonate with your situation or that of a friend.

 

For the newly diagnosed person:

You have three choices:

  • “Cheat” as soon as you can and do the same things you did before disability and see if it turns out differently
  • Walk away and find a different opportunity to give
  • Consider how you can modify your volunteer role

 

If you choose this last one, your excellent problem-solving skills will come up with solutions I’m sure. They won’t be as quick or easy as the way you used to do things, but they’ll work. You’re so good at training and supervising, I wonder if you’ve considered finding an aide to do your lifting.

When you start asking for help and/or accepting it, keep the seesaw in mind. At the end of the day have you given as much as you’ve gotten?  You’re so used to being the heavy end of the seesaw giving and giving, it’s time to work on your skills on the other end.  I know it isn’t nearly as fun, but it does trim down one’s pride a bit, which is a good thing for me anyway.

 

 

For the spouse of the newly disabled person:

If your spouse is like most of us she’ll “be good” for a while, then “cheat” as you fear and overdo it.  Unfortunately some of us are slow learners when it comes to accepting limitations. But she’s bright and will eventually start figuring ways around the limitations (like hiring an aide to be by her side for an hour a day or such) to do the parts of the job she should no longer do. In some ways your job is harder, offering help, letting her learn to ask and sympathizing when she feels bad after overreaching.  You’ll want to say “I told you…” but if you can content yourself with “I’m so sorry” you’ll live longer and have less futile fights!

A friend who is still getting her sea legs in retirement asked for sage advice. I ruminated and came up with the following:

Richard Johnson has done a lot of good work in the area of retirement. His Retirement Success Factors are:

Work Reorientation, Attitude Toward Retirement, Directedness, Health Perception, Financial Security, Current Life Satisfaction, Projected Life Satisfaction, Life Meaning, Leisure Interests, Adaptability, Life Stage Satisfaction, Dependents, Family and Relationship Issues, Perception of Age, and Replacement of Work Function. You might enjoy doing one of his online programs.

Having been retired 13 years, I’m finding myself fine-tuning my involvements in the community. For the first dozen years I said “yes” to too much, I think. All good stuff, but the work/life balance was skewed toward the work end of things too much. I’m starting to say “no” to another term on boards where I’ve contributed a lot. It’s time for others to have a swing at it. I’m transitioning the pet food program to the Shelter which will do it differently with less personal involvement. It’s hard to let go of things, especially because I haven’t found replacement causes to soak up all the time. Something is telling me it’s time to concentrate more on recreation, prayer, spiritual reading and rest. I’ve declared this year as a Sabbatical as in prioritizing some Sabbath for myself. I don’t exactly know what that will look like, but should be interesting to find out.

I have a hunch leisure activities get short shrift for many of us leading to burn-out (which is possible in retirement)! After so many years of doing for others, it takes thought to figure out how to just be and enjoy the moment for part of each day.

That’s my philosophizing for the moment. Back to attending a boring meeting by phone, luckily with my line muted so I can multi-task.

Enjoy fall, crunching leaves, apple crisp and the sounds of geese getting ready to go south!

In addition to all the great books about retirement, check out the podcasts at www.retireerebels.com for great info.

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!

I’m sixty-eight, totally blind and retired, so I thought I’d sneak through life without ever having to do a PowerPoint presentation. But I’ll be doing a talk on Wisconsin Public Television and everybody else does theirs with a PowerPoint, so I reluctantly decided I’d do one. I had no trouble preparing the text for the slides, but I wanted it to “pop” as a sighted friend described it. Luckily this friend volunteered to do so for free, although some chocolate did change hands.

Next I had to figure out how to show the PowerPoint. I didn’t want to be trying to use someone else’s technology (which might or might not be accessible to me) to show it. I decided to number slides and ask an audience member to use the slide clicker for me. I’d ring a bell and state the number of the slide I wanted. The method worked perfectly and didn’t seem to distract the audience. The presentation is on Being Access Able, so it made a great example of asking for help and people being willing to make accommodations.

Getting ready for a White Cane Day celebration we’re having in Eau Claire gave me the justification I’d been looking for to buy a beeping ball. I needed it for outdoor games, but it costs $40. It’s low tech, just a battery and a beeper inside a soft, spongy ball. After the event, I’ll donate it where grandparents can check it out to play with grandkids, kids can play catch whether they have a visual impairment or not, etc. Once families know it’s out there, they can consider buying or approach a civic club like Lions International about funding a ball for them.

The new iPhone app that’s garnering a good bit of attention in the blindness community is Seeing AI. It’s a free app designed by Microsoft for I-devices. It takes a picture of text or bar codes and then reads it aloud. The entertaining part is that it will also take pictures of people and scenes. For people, it will tell you their age, gender and expression. It’s not perfect. I’ve been everything from a 77 year-old female to a 55 year-old male (after I got a haircut). It’s providing a good bit of hilarity at gatherings and sparking some interesting discussions about what artificial intelligence can do nowadays and how humans feel about it.

My reactions to this app and another one that described the recent eclipse are: bring it on! No app will be perfect and make my experience of the world be the same as a sighted person’s, but they add something to my experience. A beeping ball, an app or ability to do PowerPoint expands my choices which means empowerment in the technology field. I’ll still choose to rely on sighted friends’ reports to tell me if something “pops”.

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!