A Different Normal

by Richard M. Cohen

We take it for granted, the ornate front steps and tasteful stride down into the kitchen or living room. The kids are upstairs calling out for help on their homework and can we have dinner, down the steep stairs, out onto the uneven lawn?

This is a common scene of the great American family at day’s end. Mom and Dad sip a drink, too content to be mindful of a large and growing segment of the population that is shut away from that idyllic life.

Think about the logistics: These individuals are the disabled. Even if they could find and win jobs to support an attractive lifestyle, the work would likely be low-paying. The unemployment among the disabled runs at about 75 percent. Transportation for those who can’t afford specially fitted vehicles is out of reach. A shocking number of the disabled are locked away in nursing homes, though government could probably spend less money locating affordable housing, decent jobs, and assisting with transportation to assist people with special needs.

The leaders of the independent living movement often operate from wheelchairs. They bring passion to their cause and know the ins and outs of the bureaucratic documents, such as the Americans with Disabilities Act. Most would agree that their biggest hurdle is a condescending or ignorant public that does not give a damn.

Americans see the disabled, physically and mentally, as half people. Then there are the myths: ‘the disabled lead tragic lives and deserve our pity’ myth; ‘the disabilities define people’ myth; ‘the disabled are sick and in endless pain’ myth; ‘the disabled are special and deserve special treatment’ myth. These are all wrong and stupid. The myths are nothing more than a guaranteed formula for never changing the system.

The independence movement is cross-disability. You will see as many white canes and dogs as wheel chairs. These people, as they are known with good, old-fashioned condescension are victims of quiet discrimination. So are the chronically ill. The chronically healthy do not want to deal with any of us. Leaders of the independent living movement find that discrimination comes at them even from the medical community. A little too freakish. Too much paper work. Too many special needs. I would have expected much more from our doctors.

One alternative to independent living commonly accepted by a healthy public is assisted living, which many in the disability world consider segregated and second-rate. Many call it glorified nursing-home care. There are many unhappy people whom god did not seem to smile upon in the first place.

And the healthy are continuing the trend, which I would label again as genuine discrimination. You do not need race, religion, or gender to make discrimination a powerful issue. The sick and disabled seem to have a soft voice, difficult to hear over life’s din, unless people are listening which apparently, they are not.

Americans do not seem to know or care much about the living conditions of the sick and disabled. Are you sympathetic to the sick and disabled who desperately seek independence? If not, why not? Add your comments to this Discussion on the Chronic Disease & Disability Exchange.

by Richard M. Cohen

For a long time I thought multiple sclerosis was about as bad as it got.  Then I joined the Council of the Harvard NeuroDiscovery Center and learned about Huntington’s disease and Amyotrophic Lateral Sclerosis (ALS), which is also known as Lou Gehrig’s disease.   My view of my own hardships and really the world, have changed.

I profiled an ALS patient in my second book, Strong at the Broken Places.  I saw a lot and learned even more about the disease.  Horrible.  Maybe the worst.  I met a physician in his late 40s, an academic ophthalmologist living – if that is what you can call it – in Beverly Hills.  He lived in a living room converted to a hospital-like area in the home of his retired parents, who were best able to take care of him.  His wife and children lived in the neighborhood and were frequent visitors.

Neil just lay motionless in bed, an inanimate object that could have been on display in a wax museum.  Though his color was good, a healthy pink, and he was clean shaven, not a muscle even quivered.  Neil’s eyes were wide open, staring straight ahead.  Every five minutes a bell rang.  A nurse walked over and put drops in Neil’s eyes because he could not blink.  “Talk to him, Richard.  We read Blindsided.  Speak.  He will understand everything you say.”

I stepped into Neil’s line of sight and proceeded to tell him about my new book.  There was absolutely no response, though I realized he could understand every word I spoke.  To say the experience was weird does not even come close.  Neil was hooked up to a polygraph for administrating lie detector tests.  He would be asked yes or no questions, and could communicate in a rudimentary way.  Neil’s death was the final fact I was able to wedge into the book a few years later.

Diseases are cruel.  Suddenly, my MS seemed manageable, if not reasonable.  If you are sick, just take a look around you.  Eric Lowen is a singer.  Eric lives in his wheelchair and can no longer sing.  Eric has outlived his life expectancy since his diagnosis many times over.  He can still speak.  I reach him in California regularly.  He wears a headset and can carry on conversations normally.

I don’t know that I could live with that disease past a certain point.  Neil had no exit strategy.  Neither does Eric, that I know of.  I do know that he cannot do it alone.  What a horrible position for a loved one to be in.  I suppose there are ways, with no questions asked.

I just want to know how we can spend upward of $2 trillion on foreign soil fighting an uncertain enemy while we spend $29 billion on National Institutes of Health  and a certain enemy that kills our citizens arbitrarily in the night.  I would like our national leaders to spend a day or two with an ALS patient or some poor soul with pancreatic cancer or any other disease that kills horribly and rethink our national priorities.  Disease is terrorism, too.

Suppose you got ALS or another dreaded terminal illness that was going to rob you of everything you are.  Could you take your own life if you had a horrible disease leading to certain death? Add your comments to this Discussion in the Chronic Disease & Disability Exchange.

by Richard M. Cohen

Journalism is America’s greatest continuing education program. It never ceases to amaze me how much I do not know. When I started my second book, Strong at the Broken Paces, I took on mental illness as a subject. I knew that one person in five, maybe four (whose statistics do you believe?) shows symptoms of a mental illness. It can be simple depression… which is only simple if it’s not you who is feeling it.

That’s it – the sum of my knowledge about a terrible problem affecting millions of Americans.

There is something else I know. I and my friends and neighbors, school chums and Sunday school pals grew up making fun of the mentally ill. And black people and the disabled. They were great targets because we thought they were weak and vulnerable. We didn’t know anybody in those categories, but not having a clue didn’t stop us.

So, here I was, an alleged adult, now preparing to profile a man living with bipolar disorder for a serious book, and all I could think was, get me out of here. I had already publicly admitted that I felt funny meeting the man I would profile – not exactly a healthy approach to portraying someone accurately. I used the word “crazy” in front of him. Not good. That began a conversation he and I had about the power of language. How about the power of culture? Movies and music have long portrayed the mentally ill as violent, not to mention dangerous, terrifying, unkempt, smelly and, of course, sexually deviant. Remember ‘Psycho‘? I only recently came out from under the bed.

The point is that we are products of our popular culture, and I am no different. Only, I should know better. The mentally ill are well aware of how they are seen by an indifferent public. Larry, my bipolar friend, is gentle and completely rational. Larry also is supremely patient with people who put their foot in their mouth. He has taught me a lot. People who must grapple with a mental illness should not have to take us on, too.

We have a long history to overcome.

Our kids should study this subject in school. Students discuss civil rights. I argue that how we discriminate against the disabled is a genuine civil rights issue. The mentally ill need the same protection. Want some evidence? Check out this press release issued not long ago. “The Justice Department’s Civil Rights Division today announced that it has filed a motion for immediate relief to protect individuals confined in seven state-run psychiatric hospitals in Georgia from the imminent and serious threat of harm to their lives, health and safety.” Need I say more?

Do we as a society discriminate against the mentally ill? Americans are afraid of the mentally ill in large part because of how they are portrayed in story and song. What are your thoughts? Add your comments to this Discussion in the Chronic Disease & Disability Exchange.