Category: Disability

Our awkward problem of political gerontocracy

I wrote at Vox today about an awkward problem we should discuss without rancor or euphemism:

In one of the most dramatic moments in the Senate in years, 80-year-old John McCain rallied from surgery and a diagnosis of brain cancer to cast a 1 am vote that torpedoed Republican efforts to repeal Obamacare — for now. The vote had been put on hold once already, to give him time to recuperate.

For all the drama, we shouldn’t be surprised that a medical emergency interfered with Senate business. The highest levels of American politics bear an uncomfortable resemblance to a gerontocracy. From the Senate to the presidency to — perhaps most strikingly — the Supreme Court, top positions are held more and more by people in their 70s or above.

Disruptive medical tragedies are an unavoidable statistical consequence of this trend, as is the risk that key political actors will develop cognitive impairment. There’s no easy solution to the problem, but it demands a frank conversation.

Reforms such as term appointments for justices could help with the problem, but it’s just as important to try to shift societal norms to take more seriously some elemental realities of human aging.

One paragraph that didn’t make it into the piece for space is also pertinent:

Where policies affecting same-sex marriage, student loans, immigration, climate change, and net neutrality are being debated, we need more young voices at the table. Particularly in safe districts with low partisan turnover, senior politicians accumulate privileges of seniority while they consolidate their personal power. Veteran politicians like Charles Rangel become difficult to dislodge, even when it’s past time for them to pass the baton.

What’s more, young adults who don’t see their issues prioritized, and who see elite politics dominated by their parents’ and grandparents’ generations can easily tune out, ceding the process to others.

More here.

BCRA and the disability community

I’ve been doing some writing for Slate these days. I wrote a long and profound piece on BCRA and disability here.

Just today, I did a podcast with Jordan Weissmann. I bloviated, but it was fun. I have to raise my podcast game.

The best part was schooling Jordan on BCRA by making analogy to Jay-Z and Rihanna’s relationship woes. Still not sure why he kept laughing when I was trying to make a serious point.

Cruel to be kind on Medicaid expansion?

Efforts to repeal ACA have run into real political trouble. Even in Arkansas and other conservative states, angry town hall crowds are berating Republican legislators over the issue. President Trump’s poll numbers are sinking. For the first time, the majority of Americans express support for ACA, too. Efforts to roll back ACA’s Medicaid expansion have proved particularly difficult. Democratic and Republican Governors oppose the idea. So do many other key constituencies.

The politics changed after November 8 because the real choices are starkly before us: If ACA is repealed, what will actually happen to millions of vulnerable Americans who rely on ACA for essential health care and coverage?

Facing these stark questions, some conservatives bluntly maintain that we should snatch health coverage from millions of people. The brutality of such arguments makes them politically self-immolating. So the search is on for kinder and gentler talking points against the ACA. In a creative bit of political jujitsu, conservatives argue that Obamacare itself harms the vulnerable, and that we must repeal ACA to really help the most deserving.

A particularly brazen argument is now making the rounds. On this account, ACA’s Medicaid expansion for able-bodied poor people harms the most vulnerable by siphoning away state funds that would otherwise finance disability services. If you aren’t steeped in Medicaid or disability policy, this argument sounds plausible.

I consider the realities here, at healthinsurance.org.

Do I really need him in the cabin?

Happy to answer a question posted by NCG, and I apologize for hijacking the RBC with service dog issues . . .  I guess I’m not that sorry.  I didn’t start it.  NCG wanted to know if I need my balance-walker dog in the airplane cabin.   It’s a familiar question.  Children often ask to pet my dog when we’re in a restaurant, for example, and when I explain that they can’t pet him because he’s working, I get the kind of withering look that only a pre-schooler can give, and they point out that he is just lying there. No, I don’t need my dog once I’m seated in a restaurant or the airplane cabin, but I need him to get me there and back. If I can’t have my dog in the airplane cabin, here’s what my business trips would look like:  Continue reading “Do I really need him in the cabin?”

Hallelujah

I generally react badly to those heartwarming viral videos about kids with intellectual and developmental disabilities or related challenges. So many of these videos are really designed to elicit pity by reminding us of what a child can’t do rather than showing a genuine, realistic achievement. I’ve seen maybe fifty variants of the high school student with Down syndrome, manager of the basketball team, who is allowed to take a freebie shot that falls through the bucket. It’s great to give a kid that experience…but yeah. So many inspiring videos are implicitly about the inspiring caregiver, or about the random non-disabled person who does something basically kind, such as the football star who joined a boy who lives with autism [typo fixed] for lunch.

Kaylee Rodgers attends the Killard House School in Donaghadee, Northern Ireland. She lives with autism. And as you can hear: Wow, she can really sing. It doesn’t hurt that she’s singing Leonard Cohen’s Hallelujah.(h/t New York Post.)

And yeah, for many of us this song will always be bittersweet….
Continue reading “Hallelujah”

Quote of the Day

This is not the republic of my imagination.

-Charles Dickens, letter to William Macready, from Baltimore (1842)

Eating out

Some American class realities are so mundane that that they generally go unnoticed. Sunday night, I took my bro-in-law Vincent out for dinner at a nice but not particularly fancy establishment in south Chicagoland. There was a wait, and all the chairs were taken in the crowded entry-way. Vincent wasn’t real happy about that. In a few moments, a single mom who could have been Roseanne Barr’s stunt double called to her son: “Get up.” She gestured to me that Vincent should sit in the vacated seat. Vincent and I went on to have a nice dinner. None of our white and black working-class fellow customers eating out with their kids seemed to much notice or care that we didn’t always eat with the greatest decorum.

I hate taking Vincent to pricey restaurants mostly filled with my own educational/income peers. People say all the kind things. Yet it’s not uncommon for customers at nearby tables to make us feel uncomfortable when a few chunks of Vincent’s chicken ends up on his shirt or to visibly fidget when he detracts from their elegant dining experience by allowing his fingers to migrate into the tomato sauce.

Working-class people are less rattled by the practical realities of disability and caregiving. Everyone has a cousin with an issue, a parent or an aunt who works as a special education teacher or direct care worker. Unlike the students at our university’s fancy lab school, working-class kids attend gym class, share a school bus, and sit in the same lunch room with peers living with various forms of intellectual or developmental disabilities. The realities and challenges of disability are a more routine part of everyday life. And it shows.

Law enforcement challenges of intellectual disabilities-producer’s cut

As readers know, this is a topic dear to my heart.

On January 12, 2013, Robert Ethan Saylor, a twenty-six-year-old man living with Down syndrome, went to seeZero Dark Thirty at a local theater in Frederick County, Maryland. He was accompanied by his attendant, Mary Crosby. When the movie ended, Crosby asked him if he was ready to go home. Saylor became angry, and Crosby called Saylor’s mother for advice on managing the situation. Saylor’s mother suggested that Crosby go get the car to give her son an opportunity to calm down.

While Crosby was gone, Saylor decided to go back inside the theater. He sat down in his original seat to watchZero Dark Thirty a second time. Customers aren’t supposed to do this, and he was asked to leave. Against Crosby’s advice, a theater manager called three off-duty sheriff’s deputies who were working security. Things got loud, and then physical as they grabbed the 300-pound Saylor and tried to drag him out. Saylor ended up on the ground in cuffs. He suffered a fractured larynx, and died. The Baltimore Chief Medical Examiner’s Office ruled his death a homicide as a result of positional asphyxia.

The officers were never indicted. I believe that was the right call. I doubt these three officers had any desire to hurt Mr. Saylor, let alone to cause his death. That is precisely what makes such cases instructive and frightening. Indeed, the deputies’ legal defense was that they had followed their training in their steady escalation of force.

More from me here at the Washington Monthly.

By the way, my original conclusion may be found below the fold. My WaMo editors asked for a different conclusion, since this seemed to render a harsh judgment not in keeping with the tone carried in the rest of the piece… Continue reading “Law enforcement challenges of intellectual disabilities-producer’s cut”

59th Street METRA Station, 25 years after the Americans with Disabilities Act

This was the scene yesterday morning at the 59th Street Metra Station-the one distinctively marked “University of Chicago.” I could have picked more dramatic pictures of senior citizens struggling on the stairs, or of people slipping in sleeting rain. These are pictures from a nice sunny day. This departing passenger happens to be wearing a heavy cast on her foot.

And this was a nice day.

On the sunniest day, Hyde Park residents with disabilities, a 12-year-old Laboratory School student who uses a wheelchair, a University of Chicago visitor, student, staff member, or faculty member with impaired mobility cannot use the nearest train station marked “University of Chicago.”  My 84-year-old mother might want to see David Axelrod or other University luminaries who speak at International House, which is right next door to the station. She couldn’t do that, because she couldn’t handle the stairs.

My mom and everyone else would need to find less convenient alternatives. The 57th Street station is not at the end of the world. Still, it’s a brisk walk away, much further from many University of Chicago buildings and amenities. President George HW Bush signed the Americans with Disabilities Act more than 25 years ago. Because 59th Street is not deemed a “key station,” there is apparently no legal requirement for full accessibility.

As it happens, the 59th Street station is an eyesore. Renovations now underway might make it less of a blight on the neighborhood. You can see the outward signs of this work in the pictures below the fold.  The cosmetic surgery is beside the point. The City of Chicago, Metra, and the University of Chicago need to get this right.

We might be making progress. A Metra representative Meg Thomas-Reile, emails that:

The work that is now going on at 59th St. to replace the platform and head houses does not include the addition of an elevator.

However, Metra does have plans to do a more extensive renovation of the station that would include the addition of an elevator. We expect to begin design work on that project soon.

I read this with hope, Then my heart sank to read the remainder of her email, which includes the classic Illinois catch:

The timeline for the work, however, would be dependent on funding. We are currently planning to use $3.5 million from the state bond program to help pay for the work. That funding is now on hold due to the state budget situation.

Like everyone else, people in wheelchairs are waiting for our fair state’s political budget gridlock to be resolved.

There’s really no excuse that we’re still talking about this issue in 2016. Metra should certainly pay for this. But if there is a glitch, the University should make sure this gets done. We’ve had more than a quarter-century to secure proper disability access at the train station that bears our name. Our multi-billion-dollar endowment is certainly used for more costly investments in real estate and neighborhood infrastructure than one long-overdue train station elevator. There’s equally little excuse for our student activists-ready to demonstrate about a myriad of national issues-to be so passive about boring yet basic issues of inclusion that hit much closer to home.

Continue reading “59th Street METRA Station, 25 years after the Americans with Disabilities Act”