Archives for August 2013

Why change is so hard

My mom and I had an experience last week that reminded me why it’s so hard to bring Wheelchair-Ramp-Sign-33964037about change.

The day started out simply enough. Mom needed an MRI, per doctor’s orders, so we went to the imaging office for the test.

Mom can walk with the aid of a walker for a few yards, but mostly she’s in a wheelchair. She can’t negotiate steps or curbs, so when we’re out, I wheel her around in a portable wheelchair I keep in the trunk of my car.

A medical building with no wheelchair access

When we arrived at the MRI clinic, I discovered there was no ramp leading to the front door. We walked around to the back of the building and there was no ramp there, either.

So I left mom in the parking lot, hoping she wouldn’t get hit by a car, and went inside to ask how to get her in the door. We had to walk down a bumpy sidewalk, up a steep driveway and into the parking lot of the next building to reach a ramp that would let us into the right office.

By the time we arrived, I was furious. What kind of medical building has no handicap access? Don’t they know the Americans With Disabilities Act requires such access for public buildings?

The receptionist in the imaging office said they had gotten other complaints about inaccessibility and she gave me the name and phone number of their landlord. There was no manager on site to complain to.

Got a complaint? Get ready for red tape

The next day, I called the ADA coordinator for the city of Austin and she informed me she could only handle complaints about city-owned buildings.  She directed me to the city’s Equal Employment & Fair Housing Office, which investigates complaints under the Public Accommodations Ordinance. This ordinance prohibits discrimination against people with disabilities.

The head of that office, whom I reached after multiple phone calls, said I would have to come in and file a complaint in person on behalf of mom. I would need to show that I have power of attorney for her and that my complaint would have to be notarized. He also said they don’t get many complaints like this. I wonder why.

I suppose the city has reasons for making people jump through so many hoops, but it’s not clear to me what those reasons are.

Who has time?

All I know is I have my hands full earning a living and helping my aging mother. I don’t have time to go through the maze of paperwork the city requires to look into something as basic and obvious as wheelchair access to a medical building.

I did call the landlord and the manager of the imaging company and lodged telephone complaints. But I can tell that seeing this process through will take more time and energy than I have. And besides, we’ll probably never go to the building again — I hope.

Like I said, now I know why it’s so hard to bring change, even when it’s badly needed. I just feel bad for the next person in a wheelchair who tries to get into that same building.

Why politics is the dark side

I read a news story today that reminded me why I think politics is a nauseating business.

It was a story about how members of Gov. Rick Perry’s staff are negotiating with the Obama Administration to collect $100 million in Medicaid money under the Affordable Care Act (AKA ObamaCare, but I refuse to call it that.)

The money would be used to provide community-based services for people with intellectual disabilities so they can live with their families and not in institutions. I was thrilled to hear this news.

Perry changes tune

The fact that the governor’s office is seeking this funding is newsworthy because Rick Perry has been so vocal about opposing the Affordable Care Act. He has called the law a “monstrosity” and has refused to set up insurance exchanges, which would allow the uninsured in Texas to buy policies.

And he has turned down $100 billion in federal money for Medicaid expansion so that 1.5 million Texans can get health care.

The fact that he is going to accept federal money for one purpose but not another has drawn him political fire. Politico called him to task over the discrepancy in his stand, but the Governor’s folks say there’s no conflict. They say they’ve been seeking for years — long before the ACA — to provide more community services for people with disabilities .

Put a lid on it

I found myself wanting to say “Shhhhh!” to Politico and to the disability advocates who are criticizing the governor. Keep your big mouths shut. If Perry gets any kind of backlash about accepting any ACA money, he may yank the deal. And only people with disabilities will be hurt.

That’s why I hate politics. It’s all about scoring points at the expense of the opponent. Anyone else who gets hurt is just collateral damage.

Baby boomers beware

Disabled-Paper-Figure-5264557Some people may wonder why I blog about disability issues. The simple and most direct reason is that I once had an uncle with a profound intellectual disability. He had such a powerful healing effect on me that I wrote a book about him called My Father’s Eyes, due out later this year.

There are other reasons that I focus on this issue. As I’ve researched and studied the world that people with disabilities live in, I’ve become more and more concerned about their welfare.

And I’ve learned that there are an awful lot of folks who have some kind of physical or mental limitation. The U.S. Census Bureau reports that 56.7 million Americans have a disability of some sort. That’s almost 20 percent of our population. That’s a lot of people.

Expand your definition of disability

When the Census Bureau puts out numbers like these, they are counting more than those who live their lives in wheelchairs or in institutions. They’re counting people who have visual and hearing impairments, intellectual and mental disabilities, and folks who use a cane or a walker and those who have difficulty dressing, managing their money and other activities.

Here’s my point. There are people with disabilities all around us. If we stop to think about what disability really means, then we realize that there are lots of people in our immediate vicinity who are counted as disabled by the Census Bureau.

There’s my friend with a mental illness. There’s my mother, who uses a walker and needs help pulling her medications together. There’s my yoga instructor, who has severe scoliosis but still manages to teach classes. There’s the 102-year-old lady at church who needs a hearing aid to hear the sermon.

We may all face disability

I would say that 20 percent of the population means disabilities are ubiquitous in our society. Yet, on the 23rd anniversary of the signing of the Americans with Disabilities Act, we still have a long way to go before recognizing the impact of these numbers and addressing the needs of these folks.

Less than half of them of working age have jobs. About a third live in poverty. Many of them receive one or more kinds of government assistance, including access to health care, housing and social services. In 2008, the federal government spent $357 billion on programs and services for working age people with disabilities.

As the Census Bureau points out, the numbers are growing as the Baby Boom generation ages.

So here’s my final point. Not only does each of us probably know more than one person with a disability, odds are that we may join their ranks sometime in the future.

It behooves all of us to care about this population and to make sure their needs are met and that they have a chance to live healthy, productive lives.

This is why we need journalists

106233_9376As a democracy, it is essential that we have newspapers, journalists and especially investigative reporters. How else are we going to hold our elected officials and governments accountable?

Besides, as York Times media critic David Carr has pointed out, if it weren’t for the Fourth Estate, what would the talking heads on Fox, MSNBC and talk radio have to yammer about?

But there’s another more compelling reason we need an independent and aggressive media. Our society depends on the reporting work of these watchdogs to dig out the bones and the skeletons that hide in our midst.

If it weren’t for their work, the general public wouldn’t know about Watergate or Iran-Contra or a host of other acts of skullduggery.  And we also wouldn’t know that 40 years after TV reporter Geraldo Rivera broke the news of scandalous conditions at the Willowbrook State School on Long Island, abusive  conditions still exist at state-run institutions in New York.

Must we have scandal to get reform?

Rivera’s shocking video footage of life inside the state institution for people with intellectual disabilities led to the eventual closure of the facility. At the time, New York Gov. Hugh Carey began a long overdue reform of the institutional system. And he appointed a commission and gave it strong authority to monitor the treatment of people living in institutions.

But that commission has since lost much of its power and its zeal for investigations. It tends now to play down allegations of abuse and its funding has been slashed to the point where it cannot be an effective overseer.

So now we have a situation where it’s hard to fire workers who abuse and neglect the vulnerable citizens who live in New York institutions. Worker unions have intervened in many cases and employees accused of such offenses as biting, hitting and leaving bleeding residents naked on the floor have been able to keep their jobs.

No finger-pointing allowed

New York is not unique on this front. The Austin American-Statesman’s Andrea Ball has reported faithfully on abusive conditions inside Texas institutions.

In Texas, at least, you can get fired for assaulting a resident at a state institution. Nevertheless, efforts to crack down on abuse have produced few results. Even the installation of surveillance cameras has done little to curb mistreatment.

As I mentioned in the beginning, stories like these remind us of why we need newspapers who hire investigative reporters.  They also remind us of why we need elected leaders who have the guts to insist on decency and humanity, even when they are opposed by powerful unions and other strong forces.

I’d hate to think the only way we can ensure civil rights for the disabled is for some terrible tragedy to occur in a state-run institution — or for someone like Geraldo Rivera to sneak a camera into a restricted area so the rest of us can see how disabled people are suffering .

It must be nice…

Texas Attorney General Greg Abbott

Greg Abbott

…to have the benefit of a hefty bank account like that of Texas Attorney General Greg Abbott.  That way, you can promote tort reform and fight against the Americans With Disabilities Act and not worry about the consequences for folks who don’t have equal power and wealth.

For the record, Greg Abbott has been paralyzed since 1984, when a tree fell on him while he was jogging. He won a multi-million dollar settlement for his injuries and gets six figures in annuity payments every year. Some years, he gets additional six-figure lump sum payments. This year, he will get an extra $400,000.

Understandably, Abbott, who is running for Texas governor, says he would gladly give all the money back if he could walk. Who could blame him?

What’s good for the goose apparently isn’t good for the gander

But incomprehensibly, he has spent the past 10 years as attorney general fighting laws that protect people with disabilities. He’s a major advocate for tort reform, which restricts the amount of settlement money injured people can get can get in lawsuits.

And he’s vigorously opposed the Americans with Disabilities Act, which bans discrimination against people who have physical or mental limitations. Abbott says the State of Texas has sovereign immunity from lawsuits seeking to enforce the law.  He doesn’t claim the same protections for private businesses or city or county governments.

The attorney general says he personally supports the ADA, but in fighting it, he’s just doing his job.

It’s all very troubling, especially since Abbott wants to take this hypocritical mindset into the Governor’s Mansion.

I just have to wonder when people are going to have enough of office holders like this, who appear to have no conscience or any sense of decency. Ambition trumps all in politics; the poor, helpless and disabled be damned.