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Bark’s Bytes #2 | The Question of I/S

 

Disability:

The Social Security Administration (SSA) defines disability as “The inability to engage in any substantial gainful activity (SGA) because of a medically determinable physical or mental impairment(s) that can be expected to result in death, or has lasted or can expect to last for a continuous period of not less than twelve months” (http://www.socialsecurity.gov/redbook/eng/overview-disability.htm#5).  The “medically determinable or mental impairments” recognized by SSA include the following TWELVE categories:  cardiovascular system, digestive system, genitourinary system, hematological disorders, immune system disorders, malignant neoplastic diseases, mental disorders, musculoskeletal system, respiratory system, skin disorders, special senses and speech, and impairments that affect multiple body systems.  I did not review all these categories, still I guessed it captured a lot of people so I searched for some disability prevalence statistics and found the following two sources.  First, according to the 2006 American Community Survey, 15.1 percent of the civilian non-institutionalized population 5 years and over in the United States, or about 41.3 million people reported a disability (www.census.gov/hhes/www/disability/whatsnew.html).  Second, The Centers for Disease Control and Prevention reported that in 2005, disability prevalence across all 50 states ranged from 11.4% to 25.8%, with an average or median estimate of 20% (www.cdc.gov/ncbddd/dh/disabilityprevalence.htm).  Based on the current U.S. Census data this means that 60,885,046 citizens, or 2 of every 10 people you encounter on a daily basis, have a physical or mental impairment that meets the very severe SSA disability definition.

Integration:

“The bringing of people of different racial or ethnic groups into unrestricted and equal association” from The American Heritage Dictionary of the English Language, Fourth Edition;
“Coordination of mental processes into a normal effective personality or with the individual’s environment” from Merriam – Webster’s Medical Dictionary; and
“The state of combination or the process of combining into completeness and harmony” from The American Heritage Stedman’s Medical Dictionary.
 

Segregation:

“The policy or practice of separating people of different races, classes, or ethnic groups, as in schools, housing, and public or commercial facilities, especially as a form of discrimination” from The American Heritage Dictionary of the English Language, Fourth Edition;
“The removal of certain parts or segments from a whole or mass” from The American Heritage Stedman’s Medical Dictionary; and
“The act of segregating, or the state of being segregated; separation from others; a parting” from Webster’s Revised Unabridged Dictionary.
 

For me, the key terms of integration I got from these definitions are:  unrestricted and equal association, coordination with the individual’s environment, and combining into completeness and harmony.  The key terms of segregation I got from these definitions are:  the policy or practice of separating people, removal from a whole or mass, and separation from others.  I will come back to these terms because, for me, they are somewhat abstract without some personal reference.  To this end, I chose to analyze my Outlook contact list to understand my own I/S status with the following results:

There are 627 people in my contact list;
These 627 people fall into the following 3 self-defined categories – 442 are acquaintances (70%), 143 are family members (23%), and 42 are friends (7%);
The 442 in the acquaintance category fall into the following 4 self defined groups – 308 are professional contacts (70%), 67 are people in my community (15%); 44 are my children’s friends (10%); and 23 are my school or college classmates (5%);
The 143 in the family category include relations going as far as 2nd cousins from both my wife’s and my family that we see on a regular basis; and
The 42 in the friend category fall into 3 self-defined groups – 19 are from my community (45%), 16 are my school or college classmates (38%), and 7 I befriended through my professional activities (17%).
 

Here is what I learned.  First, 70% of the people I know are acquaintances and, of this group, 70% are people I only interact with professionally.  Since they are working, I can assume they do not meet the SSA definition of disability.  However, they may have less severe conditions in any of those SSA categories or other conditions that impair their functioning.  Since integration requires an awareness of people’s differences, and I am mostly unaware of any impairments these acquaintances may have, the issue of I/S becomes irrelevant.  Second, my family is a segregated group (separate from others by genetics or marriage) that accounts for 23% of my contacts.  Third, my friends (despite my zubaz) account for only 7% of my contacts, are the only group where integration is relevant to me, and only 17% of these contacts come from my professional activities with 83% coming from my community and/or school activities.  All of this leads me to the following questions:

My results suggest that the most productive place to realize integration would be in the individual’s own community and secondarily in the public schools which already emphasize integration by “mainstreaming” students with DD into the “regular” classrooms.  So, why do we expect work activities for people with DD to primarily address the Question of I/S when, for me, 35 of my 42 friends came from my community and school activities?
A common explanation of integration seems to be that the person with DD should be interacting with people not paid to support them.  In my case, 50% of the people I know are professional contacts who are paid to interact with, and sometimes support, me.  So, what does paying someone to interact and support another person have to do with integration?
People with DD have unrestricted access to their community, and equal association can only be determined by the group someone chooses to join.  Coordination with the individual’s environment can be facilitated through assistive technology, reengineering space, and connecting a person to their local community.  Accomplishing completeness and harmony can only be determined by the individual.  Why is where a person with DD works more important than these realities.
The State of MN does not have a policy or practice of separating people, removing them from a whole or mass, or separating them from others.  Quite the contrary, in 2005 DHS reported that the statewide average for community work crews and individuals placements was 8.7% and 39.3% respectively.  Using these numbers, of the approximately 13,000 people served by DT&H programs, 40% or 6,240 people are supported in integrated settings.  Given that few people with DD are still living in our state hospitals, whereas many of the comparison states offered by our critics have significant state hospital populations, whats the beef with Minnesota?
However, even my questions are irrelevant; and that is the seminal point.  Utlimately, the Question of I/S is only relevant as part of a self-determination and person-centered planning discussion that genuinely addresses the person’s:  (i) unique needs; (ii) expressed preferences with regard to housing, satisfactory work, reasonable transportation, and meaningful relationships; and (iii) informed choices.  How can choosing to work with a peer group that shares your personal characeteristics, interests, and situation be compared to a “state of being segregated”?  We need to realize the Question of I/S has been asked and satisfactorily answered; and it is time to focus on individual objectives rather than contradictory system values that seek “sameness” by creating an awareness of “differences.”

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