Some random observations

Some things that have intrigued, angered or pleased me.

  • I hate cancer and its ravages so much, I feel sometimes as if I could punch it in the face.
  • A lot of ink has been spilled complaining  about United Airlines and its fiasco with Dr. David Dao. Focus on the fact that this reprehensible incident would not occur if United had put their customer’s interests before their internal needs. Too few American businesses today focus on maximizing their customer’s experiences because it is easier for them to make their own internal systems or processes serve the bottom line. When you read today that another government regulation has bit the dust, ask yourself if that move will improve your life as a consumer. Unlikely.
  • I know people who refuse to give a few bucks to a homeless person because they say they fear funding an alcohol or drug problem. How about this? You could buy a bunch of $5 McDonald gift certificates and hand those out. Or if you want to take an extra step, hand out “kindness bags” to the homeless folks asking for money. Simply buy some bags and put in a juice box or two, beef jerky, instant soup, a can of tuna and some protein bars. Needy people get real food and you have shared your gifts.
  • I get frustrated by a lot of things, but I still find myself happiest when I find the good in things and concentrate on gratitude.
  • It amuses me when I hear someone say, “That is hysterical” and they barely crack a smile. If it’s really hysterical, shouldn’t they be rolling on the floor?
  • I have seriously wondered if coffee shops would make more money if they gave away the coffee and took a percentage of all the deals conducted in their space.
  • I hate the fact that I need to approach Google with such a cautious “buyer-beware” attitude.  I like a business called Phoenix Flower Shops because  of its customer service, high quality and it is local. But when I Google Phoenix flowers  I get four listings and Phoenix Flower Shops is not the first. Other companies try to slide in on Phoenix Flower Shops brands. I know it’s my fault if I mess up and do business with one of the pretenders. It still ticks me off.
  • I have decided one of the keys to enjoying retirement is to avoid thinking about what you are not doing and focus on all the good you did before you retired. And, maybe some of the screw-ups too.
  • A few weeks ago I found myself crying when a friend completed a major accomplishment. Tears of joy over another person’s triumph are warm and gooey and probably a sign that maturity may await just around the corner.
  • A good sandwich of one of life’s most underrated gifts.

Amy Silverman’s “My Heart Can’t Even Believe It” is a very special book.

When I read My Heart Can’t Even Believe It, A Story of Science, Love and Down Syndrome by Amy Silverman, it was the first hard copy book I had read in at least two years. My commitment to reading books on Kindle cost me several months of insight and understanding I would have gained from this special book.

Amy Silverman has written the book every family member, teacher or school administrator who knows a child with Down syndrome must read. I gave a copy to my daughter, a middle school special education teacher more as a work assignment than as a present. The book, is flat out, the best documentary I have ever read on how Down syndrome affects a family.

Yet, the powerful, captivating book is so much more than that. It is a carefully researched book, but that research is always done in the context of a search for a better life for the author’s daughter born with Down syndrome, Sophie, and other family members.

I have never seen the interactions with a school system, the search for  a link with Alzheimer’s Disease and Down syndrome, or the ethics of searching for a “magic pill” to fix Down syndrome explored with this kind of intensity and effectiveness.  This book is both intellectual and passionately heartfelt by a loving mother. That is one difficult trick.

Amy Silverman has grit. I know her quite well and she takes no prisoners. The book carries an “attitude” and the F-word can be jarring, although effective. It also reveals a mom who hurts, cries and hopes impossible dreams. One would do this book a disservice by calling it a memoir. It is too well-researched and educational for that moniker. It is more a passionate first-person study of the intersection between heartbreaking experience and tough-as-nails journalism. And the damn thing can be funny. For example, Amy’s dogged pursuit of why people with Down syndrome don’t have curly hair pops up throughout the book and had me laughing amid my tears.

Let me address the elephant in the metaphorical room. In December of 2014  I juxtaposed my own physical disability with my son Jason’s experiences with Down syndrome in what was clearly a memoir called Some People Even Take Them Home. The two books are as different as a whale and a lion. Oh sure, they are both about parents coping with children with Down syndrome. Both parents fall on the smart-ass side of the scale and both parents are straight ahead people when it comes to coping with challenges. But that’s about it for similarities.

The biggest difference in the two books  is about 22 IQ points–the difference between Sophie’s higher IQ and Jason’s. That means a whole different set of challenges socially, educationally and in expectations. Sophie can read. Jason can’t. Sophie can be mainstreamed and Jason never achieved that.  Those key differences make Sophie’s life far richer, but much more complicated, even messy. Amy had to navigate school issues, drama class exclusion and segregated cheerleading in ways I never did. It is in her tales of exactly those kind of day-to-day problems that the richness of Amy’s book emerges.

The other clear difference in the book is that while I chose the 50,ooo foot memory approach, Amy chose to buttress many of her experiences with solid research. Her research is outstanding. Throughout the book I found my self saying, “Really?  I didn’t know that.” The most profound discovery Amy led me to is an incredibly disturbing one. She explores the links between Down syndrome and Alzheimer’s in ways I have not previously understood. If her numbers are correct we have much to worry about the future of our Down syndrome children. Jason is probably not going to be happy with the way I scrutinize his memory and other actions from this day forward.

I am sorry I delayed reading Amy’s tremendous book, but now the least I can do is heartily, unconditionally recommend it to others.  This is one damn important book.

 

Tim J. McGuire is the author of “Some People Even Take Them Home.”

 

Relaunch of my blog and answering the question, why do it?

Anti-climax has its place I suppose. This post was originally going to serve as my reentry into the blogosphere. News events prompted me to change that plan with a well-received blog post about Meryl Streep and Donald Trump.

Before that, I last posted a regular blog entry in mid-May as I retired from the Walter Cronkite School at Arizona State University.

I promised in that last post that during a planned hiatus, I would decide if I was going to continue the blog and exactly what form it would take if I did continue. I also needed to sort out why and whether I might continue.

This blog was born as McGuire on Life, Disability and Grief in August of 2014 out of three needs. A) I needed a broader canvas for my thoughts and feelings than my blog McGuire on Media offered me. B) I wanted a forum on disability to discuss my book, “Some People Even Take Them Home.” C) I needed to bare my soul about my grief after my late wife, Jean Fannin McGuire died in June of 2014.

My hope was that my personal experiences might offer comfort at the same time I provoked people to think deeply about grief and disability. I am convinced personal stories intrigue, stimulate and educate.

Contemplating the relaunch of the blog forced me to confront why I should do it. The truth is writing the blog on any kind of a regular schedule is perilously close to work and I just retired from that practice.

Rumination led me to realize that writing is not really work for me. It’s how I think. I add flesh and blood to all the weird ramblings in my head by writing. I need to write.

I also need to touch people. Few things make me as happy as the realization that my writing touched someone. My book, “Some People Even Take Them Home”  did not sell near as many copies as I’d like. Yet, writing that book is one of the most satisfying experiences of my life. I know it affected some people profoundly. For a writer, all you really need is to affect one person.

I admit to a deep desire to encourage people to think through issues and prompt them see things in a new light. I completely understand my opinions are my  opinions and I am wrong a lot. Writing on a public blog allows the give and take from an audience that will make you painfully aware of your errors in judgment and will applaud your successes.

So that’s why I am relaunching the blog. I changed the name to McGuire on Life so that all the old subjects are fair game, but I can also broaden my canvas to include travel, retirement and the people I meet on those new adventures.

I am still disabled. I still have a disabled son. I still think a lot about illness and grief even though I have found a delightful new love. Those topics will remain a part of this blog.

After I retired, I needed new business cards. My new card says Tim J. McGuire, Life Enthusiast.

At root, that is who I am.  To the frequent consternation of the two women I have lived with, I wake up every morning bubbling and happy and usually stay that way all day.

We are at the point in American history where too many people are  struggling to be enthusiastic about their spirituality, their politics and their futures. I don’t propose a Pollyanna approach. If I were to redo those business cards I might make it  “Realistic Life Enthusiast.”

I hope you will find that describes these blog posts.

Tim J. McGuire is the author of “Some People Even Take Them Home.”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Speaking truth to bullies

My plan was to prepare several new posts for the relaunch of my blog with a new name, McGuire on Life. I was going to explain what I have been doing for the last eight months and where I want to take the blog now.

I still want to do that and I will in the coming days. However, the Meryl Streep/Donald Trump contretemps along with an intriguing question from my wife forced my hand.

By now, most people know that arguably the best actress of our time accepted the Cecil DeMille  Lifetime Achievement award from the Hollywood Foreign Press Association Sunday with a lamentation about the President elect’ s lack of empathy.

Streep told the audience that the heartbreaking event of the year was “that moment when the person asking to sit in the most respected seat in our country imitated a disabled reporter. Someone he outranked in privilege, power and the capacity to fight back.”

Naturally, Donald Trump reacted the way all bullies do. He attacked by calling Streep overrated, he denied and he lied. He said he never mocked a disabled person.  Please watch this video and tell me Trump was not mocking Serge Kovaleski. This denial shocks and appalls. E. J. Montini, columnist for the Arizona Republic  wrote “But to continue denying irrefutable video evidence is bizarre at least and pathological at worst.”

Social media blew up Sunday night after the awards ceremony.  Twitter and Facebook was full of support for Streep’s courage and attacks charging she abused her position and opportunity. My wife, Candace, was passionate and immediately praised Streep on Facebook. As we went to bed she asked “Are you afraid to speak out against Trump?” I answered absolutely not, but the  question was not inappropriate because I have tried to keep a low profile about the President-elect on social media.

I have some bedrock beliefs and my trust in the American democratic process is one of them. This election did not go my way and that’s happened fairly often in my 45 years of voting. The people have spoken and so be it. I have not been comfortable bellyaching about the results on social media. No matter how big a mistake I believe was made, I think a good citizen should give the process a chance.

As I pondered my wife’s question and watched people defending and berating Meryl Streep, I realized something crucial about those bedrock beliefs of mine. The greatest is that we must love our brothers and sisters and treat them all with respect. I worried about this issue on November 7, the day before the election. I wrote this on Facebook.

“If you are still undecided please read this Washington Post story. As a disabled man and the father of a developmentally disabled man, I have taken this election very personally since Donald Trump mocked the disabled reporter from the New York Times. This story tells us he has obviously not learned his lesson. Is his horrible treatment of the disabled and other struggling Americans a reason to vote against the man? I believe it is. There are lots of ways to value life.”

I wrote then that I have taken this issue very personally. You see, Serge Kovaleski and I are probably the only two journalists in America with Arthrogriposis Multicongenita, a rare disease that literally means “curved joints.”  So yeah, when Trump mocked Kovaleski I saw a lot of mocking from my past, like the time three second graders made fun of the way I walked. Those little boys and Trump enraged me.

Meryl Streep totally nailed why this behavior from the leader of the free world is so dangerous and concerning when she said, “And this instinct, to humiliate when it’s modeled by someone in the public platform, by someone powerful, it filters down into everybody’s life. Because it kinda gives permission for other people to do the same thing.”

I am petrified that the new President’s abuse of everyone who disagrees with him, especially people who face life’s struggles, is going to spark an epidemic of mean-spirited ugly attacks. There is already evidence of that.

I do business with a man about once a month. We have become friendly. He told me a few weeks ago he voted for Trump “because things have to change.” That is his political opinion. As long as he’s talking about health care, education and foreign relations, no matter how much I  disagree, I will respect it.

But if the change that man and others want is the right and ability to bully the less fortunate in our society, I am going to fight those people with all my strength. And, I am going to vigorously support brave people with a real voice like Meryl Streep when they call for our leader to model civility, kindness and empathy.

My wife ‘s pointed question has helped me realize that politics is politics, but protecting those who need protecting is a higher calling that deserves my voice and Meryl Streep’s.

Tim J. McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance.

Retirement, a time to pause, enjoy, reflect and plan the future

The first three days of my retirement from teaching at the Walter Cronkite School of Journalism I slept until 9 am and lollygagged around the house until about 11.

I felt guilty and pained. It felt like I was reneging on my commitments. Except I didn’t have any commitments!

My wife says I have done a better job “learning to be retired” in the last several days. I am completely unsure what that actually means so it is obvious I have a long way to go.

I retired once before, in 2002 and that one didn’t take.

It is apparent to me that like everything else retirement means different things to different people. I have a busy six months of national and world travel planned with lots of time reserved for grandkids, kids and brand new adventures with my wife. Yet, when that subsides I do not plan on climbing into a hammock with lemonade and bon bons. There is simply no way I can shut my mind off and withdraw.

I am going to be open to any and all possibilities, but I especially want to explore where my writing might take me. I have some specific book-length projects in mind, but by the time I sit down to a keyboard those concepts may morph several times. I think I have some important things to say. Finding the vehicles and style to say them are still a bit mysterious to me.

Where this blog fits is one of the key questions I need to reflect on for the next several months. It is obvious to anyone who has been following that my output has diminished. I could blame that on a hectic final semester with two new courses and one new mode of presentation. I could blame it on a reluctance to weigh in on certain topics because they struck me as too political. That all obfuscates the real reason which is that my mission became foggy.

When I started this blog in August of 2014 I had just lost my wife of 39 years and I was on the precipice of launching a book, “Some People Even Take Them Home,” A Disabled Dad, A Down Syndrome Son and Our Journey to Acceptance.

My passion was great and my mission was clear and simple: Offer insight into grief and the experience of disability. I pray I provided wisdom. You never get past either of those experiences, but the role of these posts became murkier as I found new love and married.

I am certain I will never run out of opinions, but over the next several months I want to think carefully about the mission of this blog and about who might care about my thoughts. The direction of my major writing projects will definitely have a major influence on whether and how I continue this blog.

I would love to hear your thoughts about what has worked over the last two years and what hasn’t. And, if you have thoughts about where I should take this blog from here I’d like to hear that too.

Until I weigh in again, be kind to each other.

Tim McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance.