Survey of Fathers of Children with Disabilities

A colleague of mine, Rev. Joe Butler, is conducting a survey of fathers of children with disabilities.
If you are a father or know a father of a child with a disability, would you please forward this link to him?
https://s.zoomerang.com/s/disabilitystudies
Thanks so much!  I am excited to learn what Joe will find from his research.
McNair

More honor to parts that didn't have any

1 Corinthians 12:24b-26 says,

But God has joined together all the parts of the body.  And he has given more honor to the parts that didn't have any.  In that way, the parts of the body will not take sides.  All of them will take care of each other.  If one part suffers, every part suffers with it.  If one part is honored, every part shares in its joy.

How does one give more honor to parts that didn't have any?  Could it be that we overlook the reasons that someone would not have honor.  We overlook things like social skills or the sounds made by someone with Tourettes syndrome, or odors which might accompany someone who does not have bowel control, or other aspects of disability over which someone has little control and an inability to change.  In this way, we give honor to those who "don't have any."  For some, we would expect certain behaviors or abilities, however, for those with forms of disability, we altogether honor those people by not separating them, by changing the way things are done such that they can be included down to social skill standards, personal comfort, or traditional ways of doing things.  In this way we honor people who by societal standards do not have honor.  As we understand the lives of people who are dis-honored, we begin to understand the suffering experienced by people.

When the verse says, "If one part suffers, every part suffers with it" I believe it, but I don't see it.  People in the body do not suffer because of the suffering of others whom they may not even be aware.  Perhaps this is a description of something that happens that I am unaware of.  I may suffer from the suffering of others in ways in which I am not aware.  I am experiencing a life that is not what it should be because of those who are suffering which once again I am unaware of.  So we together should be something that we are not because of the suffering of others.  Perhaps if I was truly aware of the suffering of others and suffered with them I would be something that I currently am not.
McNair

More on disability as commodity (commoditization of disabiltiy)

"The $5.7 billion United Nations Development Program, the U.N.’s flagship anti-poverty agency, is
poor at producing lasting results,
sets unrealistic or unfocused priorities and
often seems more interested in getting funding than in setting up programs that make the best sense,
according to an internal assessment that will be discussed at a top-level meeting next month." (emphasis added)

That is the way a Fox News article begins, entitled, "UN anti-poverty agency chases cash rather than results, study finds."  The article is available here.

I feel this is the same rebuke that might be laid at the feet of many school district programs, adult service agencies and university programs.  Particularly in relation to persons with disabilities, the services they receive cause them to become a commodity that is used to pay people's salaries, buy out their time and do a wide variety of other things unrelated the reason for the actual funding.  The article goes on to say that related to the goals for which money were given they have

"limited ability . . . to demonstrate whether its poverty reduction activities have contributed to any significant change in the lives of the people it is trying to help." 

So billions of dollars have been spent, with no accountability, "limited ability" to demonstrate whether the money did anything for those it was intended to assist or whether there was any significan change in people's lives.

 

I think we do many human services in the same manner.  We assume that the human services paid exhorbitant amounts of money to serve persons with disabilities are in some way making a big difference.  Perhaps they are on some level, but the life they provide is poorly evaluated in comparison to being the type of life the average citizen would desire.  When services are monitored, they are arguably monitored under the wrong type of models, the wrong philosophy.  The result are outcomes that if viewed by the average outsider would be considered undesirable.  The person viewing the services just perhaps shrugs and says, "I guess that is the best we can do."

 

But I don't believe it is.  Our basic models are wrong which is why those with a community presence aren't being recruited to the degree they might.  Instead, natural resources are shunned in preference of those who are paid.  And those paid services have produced questionable results.

 

I don't think we need more money in human services (education, adult services, etc.).  I think we need to be wiser about

• how we spend the money,
• the goals we develop,
• the way we see the responsibilities of paid agents versus community members,
• the way we see ourselves as community members
• even the basic importance of integration which is comparable to the criticism of creating programs that do not make the best sense.

 

Change needs to happen, but will not happen till more people are aware of what the system is, how it makes disability a commodity, and finds ways to truly evaluate outcomes that would justify the spending of money on services.

 

McNair

Disability as impaired relationships

Disability as impaired relationships

Disability might be defined as a characteristic of individuals, something that impairs social relationships. Impaired relationships are possibly because a person may have an impairment in themselves that makes it difficult to form social relationships.  For example, someone might have autism.  Impaired relationships are also possibly because of discrimination by a society that does not want to develop a relationship with someone who has the characteristic called impairment.  This definition recognizes there are characteristics of individuals (impairments), and characteristics of environments, (discrimination or lack of caring or embracing the relegation of responsibility to governments, paid agents, etc.), which come together to define what disability is.

Because many people with disabilities have an impairment that impacts forming relationships (once again as above in that they have a personal impairment or experience discrimination because of their impairment), then the result is that society has to pay people to be in relationship with them because society will not choose to be in relationship with them otherwise.  These individuals are “paid relaters” or “almost friends" (Baca & McNair, 2013).  These individuals are potentially problematic in that they take the place of natural relaters or friends.

There's a degree to which the investment of society in making a bodily impairment something that does not impact function, will impact the opportunity that a person has to form relationships with others.  However, I might actually orchestrate a particular type of functional impairment and then design human services in a way that that would 1) provide control over the commodity of disability, and 2) maintain the particular form of functional impairment that needs me as the service provider.  I will not encourage community integration as that might reveal, that the separatist functional impairment that I have created is not real, and that people may actually be able to function in the community with much diminished supports being provided by the government (ie., they don't need me as a human service provider).

So the question is, to what extent have existing human services a been created by making disability a commodity?  To what extent is the creation of “paid relaters” or "almost friends" assent to the fact that disability is something that impairs social relationships?  That is, rather than working to address impaired social relationships by changing both the individual and society, I exclude people from community integration and pay workers to be in relationship with people with disabilities.  I would therefore monetarily benefit from my recognition that disability is impaired social relationships.  Human services would continue forever to be based on a medical model because a medical model both maximizes my extensive knowledge on how to evaluate individuals (whether or not I know what to do with that information in terms of interventions or actually care whether people are in natural relationships), and minimizes my lack of understanding of social environments in terms of facilitating changes in those environments such that they would lead to social relationship development (leading to interventions which could be counterproductive to my medical model of providing “paid relaters”).

“Paid relaters” are also a wide range of people.  They include every one from physicians to teachers, to social workers, to job coaches, instructional assistants or other entry level human service workers.  All of these faces in the human services crowd have at least one commonality: they need there to be something wrong with a person that “only they” can address.  Whether the thing that is wrong is real or fabricated is somewhat irrelevant.  Whether what is wrong can be attenuated by means other than what they can provide may also to some extant be irrelevant.  Whether their services make a difference is often irrelevant.  Oftentimes the services they provide are the only game in town so people can go to them or not receive services.  Are the services provided are what is best for the individuals being served?  The answer is arguable either way.  Services might be evaluated on the basis of criteria set by an agency or service provider, however, they are too frequently are not evaluated on the basis of what is best for the individual receiving the services.

Paid relaters are largely government agents from various agencies who appropriate relational positions which should be filled by community members.  Do human service agencies ever evaluate social environments to determine whether the “supports” they are providing might be filled by free agents in the community?  Do they exert any effort to facilitate the development of community relationships?  There is a huge literature on natural supports which seems to have been either lost or ignored, perhaps in part because such supports were not sought in the correct venues.

In times of fiscal restraints, the menu driven services may be attenuated, however, alternatives that would not require the services of those being paid to provide them are not explored.  We are probably not interested in cheaper services being provided by neighbors and community agents.  This is evidenced if only in the manner in which the community is not engaged when it might be.  For example, individuals with developmental disabilities living in group homes in the community are totally socially isolated from that same community in which they live.

 

If for the purposes of service provision, disability is defined medically, there is no real reason for community integration as disability is housed in the individual.  Expanding one’s mind to invite the community into the life of someone with a disability, only invites the discrimination which characterizes a social model of disability.  Apparently, the best thing to do, therefore, is to keep people away from a discriminating community and allow the “paid relaters” to rule their lives.

One means of intervention would be figure out how to address impaired relationships.  To what extent are impaired relationships due to characteristics of the individual in terms of their own impairment?  To what extent are impaired relationships due to a discriminatory environment?  To what extent are impaired relationships a natural outgrowth of the manner in which human services are designed, funded and provided?  Are existing services simply due to a lack of creativity?  If our definition of disability revolved around relationships, then we might evaluate the success of intervention programs on the basis of the presence of typical relationships with regular community members in the lives of people having the characteristic of impairment.

 

McNair