Lessons from Oliver

Paul Arango

Terry, my wife, and I are blessed with three wonderful children, and we could not be prouder of each one of them, so let me first indulge myself in bragging just a bit. We got news a couple weeks ago that Victoria, our oldest, was admitted to the GSB. Marcus, our youngest, is doing great at Rice, my alma matter.

But this essay is not about Victoria or Marcus, since I expect their story is one you are all too familiar with; instead it’s about Oliver, our middle child. Oliver was born with 5p- Syndrome. I won’t bore you with the details on 5p-, but suffice to say that having 5p- sucks for Oliver.

Oliver is non-verbal and has the intellectual capacity of your typical 2 to 3 year old, yet I have learned more from him than from any other life experience, and I wanted to share some of these lessons with you all. At places like Stanford, we interacted with the top 1% intellectually of the population, so I thought it would be worthwhile to use this essay to explore the other end of the intellectual spectrum.

The most important lesson from Oliver is that human value has little to do with how smart we are.

Oliver will never directly do great things for the planet; he will take more than he can contribute. Oliver’s impact will not be about what he does, but instead it will be about what he will teach us as we get to understand his human qualities.

I’ve learned that Oliver is not unique in that there is a purity of character in persons with special needs that the rest of us will likely never achieve. I would even propose that the smarter we are, the more likely it is that we will use our intelligence to manipulate. Sometimes this will be “justified” by the outcome, but surely not always.

In contrast, Oliver’s love is totally unconditional. He lives transparently, what you see is what you get, and he appreciates in the moment everything that’s done for him. I believe overall, I’ve been a good father, but I’m far from perfect. Yet Oliver only sees the good in me.

Persons with special needs continuously require help from the rest of us and it is precisely in this process of us helping them that we will learn much from them.

A lot of progress has occurred with society becoming more inclusive of persons with special needs and we’ve gotten rid of the horrific institutions that once housed this population for their entire life. Children with special needs now live with their families and attend school just like their siblings. We’ve embraced inclusion as the “desegregation analogue” for the special needs community.

Inclusion has been an immeasurable improvement compared to institutionalization, but now we are beginning to see its limitations, and these simply have to do with the natural aging process.

Just do the math. Oliver is 24 and now I am 61. We have a great time with Oliver in our home. But what happens when we are no longer here. Thankfully for us and Oliver, we’ve done okay financially, and this will make a huge difference for Oliver’s care when we’re gone, but most persons with special needs are much less fortunate.

Since the 1970s institutionalization of persons with special needs has been on a much-needed rapid decline. And now, right on the biological schedule, we have a generation of persons with special needs with aging mothers and fathers. Parents are retiring and adjusting to reduced income, siblings are attending college forcing families to make tough financial allocation decisions, also we see parents having strokes, cancer, dementia … And it is just natural that this happens; and when it does, inclusion as a solution breaks down.

The institutions are no longer around, and yet society has done little to figure out what to do with the generations of persons with special needs that were born in the last 30 to 50 years and were not institutionalized.

Just this week the Wall Street Journal wrote an article on how tough the COVID-19 pandemic effect was on the special needs community. It explains how they a 3x more likely to die, how they cannot practice social distancing, how their caretakers are underpaid and barely considered as healthcare providers, how they could not get PPE. COVID-19 will pass, but the root cause of this problem, which is lack of awareness regarding the needs of the aging special needs community, will not pass.

They taught us at the GSB that we needed to boil things down to something actionable, so let me make this simple. Please contact me if you are interested in helping the special needs community. There is plenty you can do, from a simple monetary contribution, to leading a project. Warmest regards to all!