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Some thoughts on Disability Visibility, the book and the topic

As part of my summer exercise into the great unknown, both academically, and personally, I checked out and completed reading the book Disability Visibility edited by Alice Wong. This book has been referenced many times on social media I follow, as well as discussed among some of the colleagues I work with at Haverford College.

I am not a fast reader, and I find myself having to go over certain passages multiple the times. However, this book was engaging from the start. The diversity of the authors, the rawness of the experiences that they shared, these all motivated me to complete the book in record time.

Yes, the majority of the stories are sad, and a few tragic — I would even say there are certain situations described that are morally reprehensible in a society that likes to think of itself as civilized. I read the book because I cannot (yet?) imagine what it is like to identify as disabled and to live in this society which has so many obstacles.

I work to keep up on the statistics encountered by people with disabilities, the increasing levels of crime relative to those who do not identify as disabled. I am also aware of discrimination realized legal ways of paying below minimum wage to people with disabilities. And this is the law, which means a substantial number of people believe this is fair and just.

However, the most compelling part of these stories was the resilience expressed in the majority of the writings. We all get frustrated at people born on third base who believe they are amazing workers, yet cannot see those who start out unable to get in the ballpark due to some obstacle yet manage the score.

I often complain to my daughter, who has severe and complex disabilities that includes developmental delays. I intend the complaining to be ironic since I doubt my daughter understands it as anything other than me interacting with her and trying to get her to smile. She will never read about these experiences, let alone write about her own. Reading this book may be a shallow and likely incomplete attempt at trying to understand her perspective, but it is sincere.

Happy Birthday Jack Dougherty

So last month, I wrote a genuine and heartfelt blog post about my mom, Mo Dougherty, who would have turned 90 in the month of May, 2020.

Today, on this memorial Day, I have seen many videos of all the wars America has fought, including World war II and the Korean conflict. My father, (John) Jack Dougherty, fought in  World War II in the Pacific theater on the Shangri-La, as well as the Korean conflict. Next month he will turn 93 years old, and though he rarely speaks, he is still important to me.

There are many battles my father has had to fight, from his upbringing in Philadelphia and Neshaminy, Pennsylvania with no running water, to the battles of World War II in Korea, to raising four boys and having to deal with the death of two of them and a third as a burn survivor.

After the war, my father graduated from LaSalle College in 1958, making me a legacy since I graduated from the same school in 1982. But while many of my friends attend college, my father’s path involved quitting high school early, serving in war, getting a GED, and then returning to school on the GI Bill while working full time for the Social Security Administration.

As much as my father served in wars, his greatest battles were much more personal. When I turn 12, he quit smoking. No patch, no therapy, he just quit because he didn’t want me to smoke, and I’m glad to say I have never even tried a cigarette.

However, the greatest battle in my father’s life has been with addiction to alcohol. Like any wars, there are casualties and survival, while noble, still has consequences. I think it’s safe to say that he lost a family, a marriage, and many friends as the side effects of this addiction, but he still survived. He has been in recovery for about 40 years, and has needed to isolate in order to survive. There were many years before I understood what his battle was that I wrote him off and out of my life. I am happy to say that this is no longer the case, and that I have realized that it has required incredible courage and persistence to be in recovery for so long and to live with the guilt that must go along with this addiction.

Given that my father is 93, I will someday be asked to give my fifth eulogy. It is my intent to not just start with his service to the country during World war II in Korea, but his achievements overcoming incredible obstacles of addiction to both cigarettes and alcohol.

So after many years, I can genuinely say that the master puppeteer is no longer with us. He has been replaced by the  hero who is my father.

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My father passed away in 2021 just after his 94th birthday, and I did give that fifth eulogy. I found many photos, and it was nice that so many family and friends came back to support us and celebrate the life of my father. He was laid to rest with his parents at our Lady of great cemetery near where he grew up in Langhorne Pennsylvania.

Today is March 2nd, 2025, as I discovered this post in my drafts folder. I also realize now that as the country slides slowly into fascism, for the sake of my family and my country, I have to find a way to rise up somehow despite the obstacles and be the hero I need.

The Role of Renaissance People

I wrote this a few years ago, forgive my delay … 🤦

Today was a bittersweet day.

My daughter Eva, who lives with multiple challenges, has been in the intensive care unit since the start of the year. Today I finally sensed that she is stable, and feel optimistic she will come home with us in time. Two weeks ago, I was preparing for the end.

As I heard this news of Eva’s improvement, I also heard news of the death of Kobe Bryant. This event is tragic, and I genuinely feel overwhelmed for his family and friends.

What makes me sad in the long run, Kobe appeared to be not just a successful sports legend, but one of a few Renaissance people in the making. It is my belief that the world needs more of these people.

In my definition, “Renaissance Person” is one who is successful in more than one area, and the degree of distinction among the relative areas of expertise, the greater the degree of Renaissance.

For example, Bruce Springsteen has demonstrated his abilities in music composition and performance, and has also successfully obtained an Oscar and a Tony. However, both of these awards involved music, his original area of expertise. He then wrote and published a book, which is also artistic but substantially different than writing music so he is on what I would consider an increasing trajectory of Renaissance.

Other examples include Bill Bradley, the senator who once played in the national basketball association; Mike Reed, the former Penn State Nittany Lion and Cincinnati Bengal linemen who also performed with the Cincinnati Symphony and composed music for Bonnie Raitt (I can’t make you love me); and Brian May, guitarist for the band Queen and PhD Professor of Astrophysics.

Is my understanding the idea of a Renaissance person is based on Leonardo da Vinci and his ability to master so many distinct disciplines.

The legend of Kobe Bryant as a basketball player does not need to be stated explicitly. However, what caught my eye was the Oscar he received for work in animation, I believe in 2018. I recall a story where they talked about his work to use graphic novels and animation in combination with sports to reach young people.

Is death today means that we will never see this second area of expertise realized, and we are all worse off because of it.

In unrelatedated news, Kobe is one of the two Philadelphia basketball Legends who hold a single game scoring record in the NBA, along with Wilt Chamberlain they have the top five highest scoring games.

No one needs days like these

Raising a child with special needs is a challenge. To help deal with this challenge, there are many heroes who come forward and rise to the occasion, making sure not only is the child supported but the family is well. People in person generally rise faster than organizations on the phone or by email. And there are many heroes from the medical field, social services, friends, and family.

However, it has been my experience that there are days when the obstacles just happen. I try to remind myself that these rarely happen intentionally, and are more likely to be caused by some combination of incompetence, forgetfulness, and simple human error.

So that is the prelude to the frustration of trying to get a UTI test for my daughter. My daughter Eva is a survivor of encephalitis and requires 24-hour nursing care. She is blind and suffers from cerebral palsy and uses a tracheostomy for breathing support. She is the definition of an immunocompromised and vulnerable person.

Having suspected a UTI, her doctor, one of the heroes, delivered a specimen cup so that we could collect urine via a catheter to confirm the suspected infection. The nurse was able to collect the sample in the early afternoon so I quickly left campus after making arrangements for colleagues to cover my classes, another set of heroes.

I arrived with my sample at the first LabCorp nearby at 2:15 but found the door locked, even though it was clearly marked on the door that the facility closed at 2:30. After calling my wife to vent a little frustration, I found another LabCorp that was further away but would be open until 3:30. Arriving in the parking lot at 3:15 and with help from a nice mall attendant I found the LabCorp at 3:20, again with the door locked. However, this time I could see the worker in an office room ignoring my knock and going into hiding. The attendant saw as well.

So, after about an hour of driving and two attempts to submit the urine sample for testing at two different LabCorp offices, we had to dump the sample. This implies that not only have we wasted an hour of my time, but we have to again subject my daughter to a catheter which is uncomfortable at best and a potential source of the infection itself at worst.

I try to tell myself that no one is intentionally trying to make this harder than it needs to be. And sure, sometimes people need to leave early. But the fact that this happened twice in the same 60 minutes and that I could see a person hiding from their responsibility … Well, this was going from unfair and into the wrong category.

I would bet that every family has a frustrating day, but every family with a vulnerable family member in need of special arrangements has more and more challenging events like the one I described today.

So, I want to leave you with a motivation to stay a little later, to reach a little further, and try a little harder, especially if you’re trying to work with a population that’s in greater need than the average. It doesn’t really take much to be a hero, sometimes it’s just showing up and staying and completing your shift — basically, just doing your job.

Happy Birthday Mom

So, 90 years ago on this very day in the city of Philadelphia my mom arrived on the planet. Sadly, she left the planet 29 years ago on almost the same calendar day.

Which implies that I am now the same age my mom was when she died. She was an amazing lady which is something everyone is required to say about their mom. She raised four boys to become men, and survived challenges and obstacles that would have defeated many people. I like to think that she just ran out of gas after surviving adversity. Everyone knew then she was amazing.

Almost 30 years later, I am approximately at the same place having raised five children to become young adults. I would argue that my family members have faced more adversity than I did directly, but the indirect consequences have been something I’ve needed to navigate.

At the same time however, I now realize that my mom was way more than amazing. With an incredible combination of intellect, humor, and savvy, she set a foundation for me to live a life where I get to work with a community of scholars and budding professionals. Heck, I even get to bring the guitar that she gave me when I was 20 years old to work.

That guitar saw me through years of schooling, and my brief but wonderful career as a semi-professional musician. To this day that guitar is part of my ongoing music therapy.

During this pandemic, I have offered to share this gift of music therapy online, with a few takers. Indirectly but substantially, all of this starts with the lady whose birthday is today.

In 1990, for her 60th birthday, my brothers and I did two creative things that I remember to this day. The first was we hid 60 bottles of Miller beer around her apartment. She enjoyed stumbling upon these bottles throughout the last year of her life and calling us, letting us know that she discovered another bottle in a drawer, cabinet, or under the sink in the bathroom.

The second creative gift I spearheaded. I took that beautiful Sigma guitar and wrote a song to the best of my ability captured the essence of my mom. She always reminded us that she was Czech (and not Czechoslovakian), where she learned to be thrifty, strategic, yet loving.

So Happy Birthday, Mo Dougherty, and save a spot for me and your son Patrick at the “kitchen table” as we watch you argue and laugh with Aunt Pat, Tim, and Mike.

Why President Trump is an oxymoron

After a blog post from years ago, prior to the 2016 election, I supported Hillary Clinton but would give a Trump presidency a chance. Although I would be disappointed, I was willing to work for the better of the country in the long run.

I still have the same feeling, I am thinking of my country. For that main reason, for the future that includes my children, I must insist that this presidency must end as quickly as possible. There have been many volumes written about the absurdity, conspiracy, incompetence, and the genuine evil promoted by this administration. I will site a few now but please remember this list is not exhausted and will probably be outdated as new catastrophes emerge hourly.

  • Immigration issues at the southern border, separation of families, children and cages and concentration camps
  • Emoluments
  • Financial malfeasance
  • Conspiracy and obstruction of justice as outlined in the Mueller report
  • Lying
  • Fighting science and fact, promoting short-term beliefs and political considerations over the long-term good of all
  • Nepotism
  • Supporting authoritarianism
  • creating virtual dumpster fires and then bragging for putting out that same fire
  • Cheating on his family and an entire country
  • Hubris
  • And arguably the worst, hypocrisy (e.g., golfing)

A more recent and complete list is provided here by David Leonhardt.

I am proud of the title of this post as I think it captures my disappointment in the current president in so many dimensions. Firstly, it is ridiculous that this man is president of anything, let alone a country as great as the United States of America. From what I have witnessed, I would not trust this man with a goldfish.

Next, moron is contained in the last word and conjures up the appropriate image of not just a dumb person, but someone who thinks they’re smarter than they really are.

Lastly, that same word also contains ox, which conjures the image of a large brainless brute who bullies their way through their own incompetence.

It is always upsetting to see people rewarded for bad behavior. This is also a reminder that democracy is not a perfect system that is just better than all of the others. It is the approximation of the best by using the popular, and he had demonstrated here people can be confused, often conflating competence with confidence.

Presently many people are pushing for impeachment hearings to start. Others suggest waiting until he is voted out of office where he can then be in prison. I believe the best approach is to do both, begin impeaching hearings as well as continue to gather evidence so he can be prosecuted once he leaves office. I would also add that as soon as possible the policy to not prosecute a sitting president be eliminated — no one should be above the law.

Blame also goes to the Republican party for tolerating this behavior and enabling these bad outcomes for short-term gains.

Non-voters and those who simply do not participate in the process are also to blame. People need to prepare and to vote.

Finally, there is blame left for the Democrats who for decades chose civility over patriotism.

One should avoid any oxymoron, especially this one.

PS: Today, House Judiciary voted two Articles of Impeachment — here’s a list of GOP/Trump defenses and why they are wrong/silly.

The role of extremes

I started my professional life working to engineer efficiency, often using parallel computation, and often by balancing resources.  And balance, “on balance,” has many advantages, see the previous post.

Then came Eva.

Eva was born about twenty years ago, a redhead on St. Patrick’s Day (following her mom, born on Christmas Eve).  Two weeks old and suffering seizures from a viral encephalitis.  There was no time for balance, for a measured approach.

Eva survived, and unexpectedly given the research I could find and understand.  It has been an exhausting amount of work, and more than a child without issues like CP, cortical blindness, seizures, reflux — eventually other issues would arise such as low platelets, scoliosis, and respiratory challenges.  In terms of disability, Eva is in the extreme of the extremes (save for the few with even more issues, they exist, and require even more support).

In trying to make lemonade from lemons, I have worked recently to pivot into accessible computing research, broadly defined.  This transition all took place as we in CS @ Haverford explored test-suite driven design to teach introductory courses and programming.  In both instances, we are forced to consider the extremes to generate solutions that apply to as large a universe of circumstances/problem instances — i.e., “universal design.”

There is a popular image entitled, “Clearing a path for people with special needs clears a path for everyone,” that gets at the point of universal design, and can be viewed at this page on UDL.  I suppose it is understandable that designers initially thought of addressing for the most popular users (i.e., “non-disabled”) since about 90% of the world’s population reports no disability, and those designs might be easier and quicker to implement.  However, the remaining group of users with disabilities is huge in the absolute (about 650 million people)!  And as the ramp clearing image demonstrates, addressing issues of access for people with disabilities, if done thoughtfully, also provides access for the majority as well.

I am not saying that extremes are always good — c’mon, think of the recent hurricanes in Puerto Rico, Texas — but thinking about extremes in design might have helped mitigate the degree of disaster.  Extremes happen, and one should be prepared, including how to handle extremes in one’s own life.

Thus, I would now say that I am pivoting into “universal design” — in pretty much everything.  Universal access does not imply balanced access, but that is the topic for a future post.

The role of balance

People generally appreciate a sense of balance in many things, or perhaps better to say they are suspect in the extremes.  As I get older I appreciate this heuristic, this more nuanced and complicated way of looking at the world.  In my basic research in parallel computing, scheduling processes “in a balanced way” can equally utilize the available resources and often get the job done most efficiently. A nice, intuitive result.

Recently the economist Thomas Piketty has received praise for his book, Capital in the Twenty-First Century.  I am not an economist, but my understanding is that he provides a detailed model of financial inequality, with substantial data to support this model.  Of course, there are those who have issues with this work, but my sense is that this work is generally accepted as accurate and contributing.

The simple answer proposed is “wealth redistribution” to make things more equal.  I do not think this is the way to go for many reasons such as the wrong incentives, “punishing actual good behavior,” and others.  I also want to note that my instinct tells me to be careful of such a simple answer; the most effective options are often the hardest (but most worthwhile).  I do support some tax policy changes to incentivize wealth from actual worth as opposed to simple inheritance-based wealth.  I really like Warren Buffett’s take on this issue.

I leave taxes as a solution at the policy level; the mechanisms are beyond my understanding or abilities, but they are important and I hope all government, financial and economic leaders dive in deeply here.  What I do know a bit about is the role and impact of education, both personally (i.e., anecdotally), and professionally.

That’s why I was glad to see Fareed Zakaria’s piece on the potential role of education to impact inequality.  It is an idea I have thought and felt personally, and believe in professionally.  I am the only kid in my family to attend college (my dad did complete college after his military service), and I attended college “to the extreme” (yes, I see the irony here :).  I think it is safe to say that my education did provide more of an opportunity for financial stability/success than my siblings, all brothers (another extreme).

My personal beliefs aside, there is evidence of this correlation between education and success.  Employers, especially in tech, complain about a lack of skilled workers.  There is data and research connecting resources invested in education vs. those spent on imprisonment (dramatic, yes, but thought-provoking).

My College now, My Country in the future

From my previous post, one would be correct to expect my disappointment in the election of Donald Trump as President of the United States.  There are too many issues to discuss regarding the reasons for this surprising outcome, but for now, I want to share a quick note prompted by a post at the college where I (proudly) serve.

Haverford College, a historically Quaker institution, promotes social justice, including diversity, inclusion, access, and protection of vulnerable populations.  The President-elect and many of his appointees and supporters do not seem to follow the same plan.  In fact, there are many examples to the contrary.

I am proud (again) to share a statement from Haverford College in response to the current “climate change” that appears be occurring in our federal government.  I feel saddened that the College felt the need to provide such a statement, but glad it did.  I only hope that the people in power hear it, consider it, respect it, and remember it.

I am proud of my country and my college now, including the federal government — I do not agree with everything (e.g., drone strikes), but impressed at the competence, temperament and overall direction of the current administration.  And I want to remain proud in the future, I really do.