A Philisophical Polemic on “Consumer” as a Code Word for People with Intellectual Disabilities

It is January 2003. The term “consumer” has become the newest “accepted” term to refer to people with certain types of disabilities, particularly mental retardation (2013 update: “mental retardation” has now been replaced with “intellectual and developmental disabilities.”) I don t like the word “consumer.” This explains why.

We have been struggling for decades about what words to use when describing people with mental retardation in a way that both communicates what condition the person has and is respectful and affords dignity to those with this condition.

In the early part of the 1900′s, medical definitions also became epithets. Classifications of differing levels of mental retardation included: moron, imbecile, and idiot. This was later replaced by such demeaning terms as “feeble-minded” and “mentally deficient.” Some of these terms became the names for organizations designed to represent and be of assistance to individuals with this condition, such as the American Association on Mental Deficiency and the Association for Retarded Citizens. As those words came into disfavor, AAMD became the AAMR and The Arc replaced the full name for the latter.

The diagnostic categories for people with differing levels of intellectual ability translated in education to the “trainably mentally retarded” and “educable mentally retarded” otherwise known as TMR and EMR. No one really felt good about this, either.

Later on a new category of disabilities was identified and the term “developmental disability” came into being. Although referring to a cadre of disabilities, in California, where there are only four disabilities that initially qualified as developmental disabilities in law (mental retardation, cerebral palsy, autism, and epilepsy), the term quickly became a “code word” for people with mental retardation. Then of course this was soon reduced to “the DD.” As the word mental retardation, or being mentally retarded has become an epithet and changed to “You retard!” (emphasis on the last syllable) or “He’s a retard!”, so it seems the kids have caught on to the legal nomenclature of developmental disability and are heard to shout, “You’re developmental!” as an epithet. Actually, it is a great thing to always continue to be developing, but I doubt this crosses the mind of the child or teen wishing to heap emotional pain on others.

Then, in order to avoid some of these problems, solutions are sought. The newest, now about 7 or 8 years old, I just can’t stand. It is the term “consumer.” As in, “Oh, I want to talk with you about one of my consumers.” I know what they mean. A person with mental retardation. They rarely are referring to individuals with any other type of disability.

What is a consumer? A consumer is one who consumes. Who uses. Who receives. Who takes. For example, when I am shopping for a car, I am a consumer of the auto sales dealer. When I leave, what am I? A driver! When I shop at Macy s, am I a shopper? When I get gasoline at the station am I a customer? When I eat at Coco’s, am I a diner? When I stay at the Holiday Inn, am I a guest? Or am I always a consumer at these places? Let’s say, for sake of argument, that at all these places I am a consumer. What happens when I go home? Am I STILL a consumer or am I a home-owner or a tenant?

Here’s the answer…well, my answer. If I am a person with mental retardation, aka a developmental disability, I am referred to by everyone who knows me as “a consumer.” But what am I consuming? When I go on the special bus, I am a consumer. When I am at the workshop, I am a consumer. When I see my social worker, I am a consumer. And when I am in my own home, a group home, I am a consumer.

If I am a person who does not have mental retardation, I am not, in every aspect and every activity of my life, a consumer. When I go on the bus I am a passenger. When I am at work, I am a worker or doctor or Administrative Assistant. When I see my social worker I am a client. And, when I go home, I am just a person at home.

So, “consumer” is now the generic term, used for the person with mental retardation, having no reference to a particular activity the person may be doing…or “consuming”.

That is the first point.

The second point is that if one is a person who uses social services, that is not one’s entire identity. Or, it should not be. That is only one service, or category of service, that one needs and receives. It is nice to have an identity as a person, separate from whatever support or medical services one may need. Just because I wear glasses most of the time, I do not refer to my status as a patient of my optometrist as my primary life role. Neither should people with disabilities have to have their primary life role be identified as the receiver of services of some public agency. For Pete s sake!! (Thank you “Pete,” wherever you are.)

Then, the last point. If one is, from sunup to sundown a consumer, when does this person have the opportunity to be a “giver?” There is a balance, of course. We all receive and we all give during each day. But if one is ONLY referred to as a “receiver,” how good does that feel? It feels terrible. Plus it isn’t true. And further, it belies the “whole person” reality of each individual. Everyone gives. And everyone receives. So why have we developed the term “takers” or “receivers” for individuals with disabilities, (them), but retain the right to be recognized as both givers and receivers as people without disabilities?

Then the really last point. The worst one. It has been my horrible experience to learn of the even more horrible experience of several individuals with disabilities who have been victims of horrible abuses. Sexual abuses with threats of death, by perpetrators who say, “It is my mission in life to rid the world of people like you who consume resources other people need. Yes, this has been said to more than one victim by more than one perpetrator in more than one state. Probably thousands, who have been silenced by both the death threats, and the horrible message that because of the disability, the individual is “sucking up” resources better used by folks who do not have disabilities. That the individual with a disability is worth so little that they should not be allowed any support or assistance.

So, to use the word “consumer” for people with mental retardation – or any disability for that matter – in my mind, because of this knowledge that I have, may inadvertently give attitudinal support or license to those who think that people with disabilities are just soaking up all those precious and limited resources that could be benefiting others who do not have disabilities.

So when I hear someone use the word consumer, all this flashes through my mind, and I react with all my heart to scream, NO!!! Don’t say that!! It denies full personhood to the individual to whom you are referring. It says that all they do is use (up) resources. It tells me nothing of what disability they may have!!! If you are referring to someone at Macy s shopping to their heart’s content, consuming as much of what Macy s offers as they can, great….but even so, I would prefer customer or shopper.

I wonder if those who freely use the term have had similar thoughts to these. I wonder what thoughts they have had, before adopting the term now used so freely as the coin of the realm. Or, sometimes, I wonder if the person hasn’t given the term any deep consideration at all, accepting at face value that this is the preferred term. Preferred by whom? I have never met a person with a disability who refers to themselves as a consumer. A client of a service agency, yes. But not a consumer.

So what is the answer? I say, let’s not use the word consumer about a person with a disability. Let’s ask people with disabilities what they like. When I ask my clients who have mental retardation what term to use for their diagnosis, they often say, “Well, I know I have mental retardation, but I don’t like that. It’s OK to say I m slow….because I am a slow learner…but I learn!! OK. “Slow learner”. I like the ‘learner” part very much, as it puts people with mental retardation and those without on the same playing field….we are all learners, hopefully for all of our lives. And, some of us do well in some areas, and not so well in others. I can certainly say that as regards physics and geophysical archeology, I am a slow learner. Some identify as slow learners as regards the mathematical sciences. For others, spelling has always been difficult.

It really is OK with me to continue the struggle to find terms to identify people with disabilities that are non-stigmatizing, command dignity and respect for the individual. And while we do so, to strive to assure that the individual is recognized as a whole person with a whole personality, who gives and receives, laughs and cries, has hopes and dreams, disappointments, good times and bad times. But something that never supports the idea that the individual is only a taker. It just bothers me. Now you know why.

UPDATE: It is now 2013, and the term mental retardation has been replaced by intellectual disability. Frankly, I don’t like that too much either, because folks with dementia, Alzheimer’s, ABI’s (Acquired Brain Injuries) and other conditions also have intellectual disabilities, so it is not an “even trade.” However, as time goes on, I expect that new terms will be found, used, tossed, replaced, etc., all striving for something respectful and descriptive. I am also sure that this term will be picked up by the kids and turned into an epithet….in a way I just can’t wait until that first kid/bully name-calls and says disparagingly, “you’re an intellectual!”

Trauma Patient Recovers, immediately wants to send a healing message to others

In 2003 I was working with a trauma patient. He was about 30 years old. He has Down Syndrome, very limited verbal language, and was being treated for multiple sexual assaults that he had experienced during his lifetime. His mother brought him for therapy to help him with his depression, anger, reverberating trauma, all of which were depicted in drawings and sometimes in his conduct. He was also moody, fearful, and had many of the laundry list of emotions and changes in his personality and conduct that other trauma victims experience, even years after the trauma has ended.

He often used hand gestures to communicate, with a little bit of American Sign Language (ASL) used as well. As is true with many individuals with Down Syndrome, he was familiar with ASL. This greatly expands their communication abilities, at least at the expressive level, and for those who are acquainted with rudimentary ASL, such as myself, this skill enhances our communication.

We had already met several times, and in this session he experienced significant relief from this trauma. I use a method called Thought Field Therapy, which is the first of the energy psychology methods, and uses the body’s natural healing mechanism to release negative feelings that often remain after a trauma. In the session I am about to describe, we were working on some of the worst aspects of the sexual assault traumas he had had. At the end of one treatment, it was easy to see that he felt the effect of the release from his body of the feelings, as his color shifted to a normal rosy color, his eyes brightened, his countenance lifted, and he said, “better.” I asked how he felt (anger, bitter, afraid, etc.) and he said, “good.” Usually his verbal communications were in one or two words.

Then he said, “stick.” Stick? I was not sure I understood him correctly. His mother said, “Yes, he said, ‘stick’.” She and I looked at each other in surprise, but wanted to provide him with what he requested. Where was I going to get a stick? I looked around and saw that I had some plants on my desk, with a stick holding the plants up. I got two sticks, cleaned them off and handed them to him. Then he said, “paper” and “scissors.” I dutifully went and got paper and scissors. Then he asked for tape, as well as some crayons.

He used one sheet of construction paper to cut out two triangles, then taped the two triangles one each on the sticks. He then placed the flat of one hand in front of him vertically (like you do in a high-five, except in front of his chest as if he were going to illustrate something. Then, with his other hand he used the flat of his hand horizontally and moved it toward the vertical hand until they touched. He said “Boom!” Then, he placed his hand on his chest, made a salute, then crossed his hands over his chest which in sign language means “I love you.”

It took him three tries to get me to understand. Now that he had healed from his trauma, he was recognizing the trauma of those who had suffered during 9-11, and by salute, and honoring the firefighters and other first responders, in their pain and suffering, and sending them his love.

Wow.

He wanted me to send the flags he created with the sticks, paper and tape, and the drawing he made which he taped to the flags, to the firefighters in New York. How in the heck was I going to do that??????? But, that is what he wanted, so I promised I would.

I contacted a friend who lives in New York and asked if he would be able to complete this mission. He said he could, so I sent my patient’s creation. My friend delivered it, along with an explanation from me, to the Fire station near Port Authority…Ladder 59 or something. They had created a display in the subway station of the huge outpouring of drawings sent by others wanting to honor the first responders. They added this drawing and flags of honor to the display, where it remained for many months. I was able to let my patient know that his gift had been gratefully received and added to the display. He was very happy to know that his message and his caring had been received, and he was proud to know that his contribution was on display.

I learned such an important lesson that day. His pain had been enormous and his suffering had lasted for many years. Yet, when he was relieved of the pain, the first thing he did was to honor others who have suffered. Frankly, I had no idea that he was aware of or concerned with 9-11. He certainly was. It wasn’t that I was underestimating him, it just never had occurred to me. Now I am aware that I should discuss current events and national historical events of significance with my patients, as they, too, are affected, but few pay attention to their worries, concerns, and desire to be part of the healing somehow.

I just will never forget that within seconds of his feeling release of his own pain, his first thought was to help others.