Flowers for Algernon

I am compelled to write a review of Flowers for Algernon not because it was a great movie, although I did enjoy it, but because of the important questions it raises about how we view people with disabilities.  This made-for-TV movie, based on Daniel Keyes's Hugo Award winning story, is well-acted and well-produced, but still has the feel of a made-for-TV movie (mostly because of the cheesy music).  The value of the movie, to me, is the questions it provokes.

Algernon is a mouse who, through a surgical procedure, has attained a much higher level of intelligence.  Charlie, an adult with intellectual disabilities, agrees to be the first human subject of the experimental procedure.  The procedure is highly successful, rapidly raising Charlie to super-genius status, but only for a time.  He eventually loses his newfound intelligence and learning ability.

Flowers for Algernon is fiction, but in our world of rapidly developing medical and informational technology, imagining such a procedure is hardly fantasy.  Sometimes it seems like more a question of when rather than if such things become possible.  Given the possibility, if not inevitability, of such developments, how should we address the ethical questions that arise?  If we can accomplish such enhancement of intelligence, does that mean we should?  And if we do, what does that say about the value we place on people with intellectual disabilities?

Before the procedure, Dr. Strauss meets with Charlie to discuss what will happen as a result.  "If this operation works, nobody will ever have to be like you were.  None of these babies will have have to grow up and go through what you went through."  Later, at the scientific conference where Dr. Strauss plans to present his results, he describes Charlie before the experiment.  "He was outside of society. . . . He was alone . . . without mental equipment that would lead him to a normal life.  He has . . . no hope for the future."  He was "one of nature's mistakes, a mistake that . . . we have corrected."

Dr. Strauss and his team intended well.  But where is the line that separates quality of life from no quality of life?  Charlie had a job, as a helper at a bakery, where he felt accepted, even if bullied a little bit.  He had his school, where he attended classes with other adults with disabilities.  Most of all, he had his spirit; he cared for others and endeavored to give of himself.  In response to Dr. Strauss's comments, Charlie said, "I am not aware of any contribution that Charlie Gordon made to society before his operation, but to describe him as a mistake is unfair.  He would have given you his last crust of bread if you asked for it."

So at what point does a disability become something to be cured?  Researchers have worked tirelessly to find cures for different kinds of cancer.  The cure and prevention of diseases like polio have undoubtedly prevented many from becoming disabled.  Technological developments are increasingly giving hearing to the deaf, sight to the blind, and the ability to walk to the paraplegic.  But when we look at someone born blind, or with an intellectual disability, without the ability to walk, or some other disability, and say, "You are incomplete, you are not right, you are not normal," what are we really saying about them?  When Dr. Strauss tells Charlie that his goal is that no one is born like Charlie, and that Charlie can't have a normal life, what is normal? What do we value?

As Charlie's IQ rose, his personality changed.  He became less caring, less able to relate to people, and lost his friends and connections.  Our abilities and disabilities are inextricably tied to our personalities.  We are who we are, mind and body.  Dr. Strauss personifies what some have called the "cult of normalcy," the belief that not only can disabilities be corrected, but that to the extent they can, they absolutely should be.  It's a question worth pondering next time you interact with someone with a disability.

Living My Own Life: Adults with Disabilities

Through the years, families of people with disabilities have chosen to place them in institutions, nursing homes, and group homes.  This is an especially crucial decision for families when the parent or other family member dies or otherwise can no longer care for the family member with disabilities.  But these are not the only options available.  There is a growing movement paving the way for individuals with disabilities to live independently.

Skeptics may object and argue that it's impossible, but in Michael Loukinen's film Living My Own Life: Adults with Disabilities, we meet several adults who, in spite of their disabilities, have managed to live on their own.  The argument of the film is that "people with disabilities have the same vision of adult life as everyone else does--a chance to live as independently as possible in their own home, to control who comes in through the door, to work at a real job and to be surrounded by friends."

Each of the individuals profiled in the film have disabilities which at first glance appear to need constant assistance and supervision.  While each does have support from others, whether from parents or home health assistants who come to the home, each one makes decisions about his or her life on his or her own.

The mother of one man profiled in the film summed up her own acceptance of the goal of her son's independence: "The most I ever hoped for was him just to be able to get out of the house. . . . and here he is, he's surviving by himself."  She had to give up her overprotectiveness, but, like any parent, came to see that he could manage independent of her.

Several of the subjects of the film have jobs, not aimless tasks in a sheltered workshop, but in actual businesses among non-disabled people.  Dohn Hoyle, an advocate and friend of one of the men, points out that some would say "that some people don't have the capacity to work.  What we have to look at is what can people do, not what their limitations are, not what their disabilities are, but what can people do."

Can the individuals in this film and other people with disabilities live completely independently of anyone?  Likely not.  Like all of us, they depend on others for support and community.  Their support may be more deliberate and intensive, but the key is that they choose their community and their support.  They have achieved a high level of self-determination.

Hoyle concludes, "This is possible for everyone.  The level of disability, medical needs, they don't matter; what matters is early planning and giving them a chance. . . . Limitations mean far less than letting people . . . get their piece of the American dream. . . . That's all any of us can ask."

Including Samuel

Last week I attended a screening of Including Samuel with Kelly and Elliot.  It was shown at a local elementary school and moderated by our friend Jennifer, who has attended ARDs with Kelly and assisted her tirelessly with paperwork and ARD preparation.  Including Samuel addresses the challenges of including children with disabilities in mainstream classrooms, a topic that is near and dear to us as we have struggled to get Chloe placed at school.

Samuel is the son of photojournalist and filmmaker Dan Habib.  When Samuel was diagnosed with cerebral palsy, he was forced to face the issue of inclusion, a topic about which he hadn't thought much about before.  Habib follows Samuel's progress, as we see Samuel interacting with his peers at school and participating in the regular education classroom.  The Habibs are fortunate to live near a school whose philosophy of full inclusion accommodates students of varying levels of disability in a single classroom.

Samuel interacts with typical classmates.

Besides Samuel, we meet hip-hop artist Keith Jones, an inspiring adult with cerebral palsy who has not let his disability prevent him from a full life, including working as a music producer, marrying and having children, and functioning independently.  He says the best thing to have happened to him was to be placed in regular education classes, not segregated classes.  Other individuals featured in the film illustrate the clear benefits of full inclusion for both the disabled and their typical peers.

Keith Jones--one inspiring guy!

Habib doesn't try to sugar coat the difficulties that arise with inclusion.  In teacher interviews, we see the range of opinions and emotions, from Samuel's teacher, who believes that full inclusion is the best way for all  children to learn, regardless of speech or mobility problems, to the mainstream teacher who tearfully describes the challenges of reaching both the superbly gifted and the profoundly disabled at the same time.  As one teacher points out, however, the danger of creating separate classrooms for disabled children is that if there is a separate classroom, it will be used, needed or not.

Given our experience with schools which have not practiced inclusion, this quote hit way too close to home: "Inclusion is an easy thing to do poorly.  When we do it poorly, we become convinced that it cannot work."  Even when one parent or one teacher promotes inclusion, a simplistic approach of placing a child with disabilities in a mainstream classroom without adequate support or appropriate modifications can lead to failure.  I fear that in many schools, poor execution has led to suspicion or outright rejection of full inclusion.

While Including Samuel does not provide all the answers, the film does a great service by raising lots of questions, and, most importantly, raising the possibility that full inclusion can and does work.

Like Stars on Earth

Every now and then a movie from "Bollywood," the thriving Indian movie industry, trickles over here to the U.S.  I haven't seen many, but they're generally thoroughly enjoyable.  You can count on them being pretty clean, and they always include extended musical numbers, which may or may not fit with the story and tone of the rest of the movie.  A favorite of mine, Lagaan, tells the story of some Indians who feel oppressed by their British colonial rulers.  They challenge the British to a cricket match, wagering the tax the British want them to pay.  It's a great movie, with wonderful history and social commentary, but they interrupt the story frequently with big song and dance numbers.

The star of Lagaan, Aamir Khan, also directed and stars in Like Stars on Earth.  Khan, who has starred in dozens of Bollywood films, plays a fun-loving art teacher at the boarding school where Ishaan has been sent.  Ishaan has failed his classes and angered his demanding father by skipping classes and not attending to his studies.  I love this portrayal of the struggles of a dyslexic kid with ADHD.  He tries to read, but the words leap off the page and the letters get all jumbled up.  He is distracted by every little thing.  Under the art teacher's tutelage at the new school his artistic talent is revealed, leading to an overall maturing, success, and reconciliation with his father.

Like Stars on Earth is a fun movie, affirming of those kids among us who live and learn differently.  As the parent of some kids who don't fit the typical mold of the "good student," I appreciated the sensitivity and joy with which the movie portrayed not only Ishaan, with his ADHD, dyslexia, and free-spiritedness, but also the physically and mentally disabled children at the art teacher's other school.

Yes, there are some lengthy musical interludes that don't really drive the story, making the movie longer than it ought to be.  (Maybe that's when India moviegoers step out for popcorn, or whatver they eat during a movie.)  But Like Stars on Earth is still an enjoyable film.

Bottom line, 2 1/2 stars.