Week 4 Blog

Stacy Peterson

GSPE 503: Smart Chapters 7 and 8 as well as other readings

Acceptance to Disability or Response to Disability

The terms adjustment, adaptation and acceptance have been used to describe "the end result of coping with a disability and successfully integrating the disability into the individual's life and identity" (p. 374). Smart reports that these terms have a negative connotation. While I appreciate Smart's attention to detail, I do feel that the use of terminology and intent can be over-analyzed as much as it can be misunderstood. When disability occurs, Smart states that the "individual's perception of etiology is shaped by his or her cultural identification" (p. 375). I agree that a person's culture impacts their perception of the disability. For example, I found the following when researching this cultural identification:

"Throughout Africa, persons with disabilities are seen as hopeless and helpless (Desta 1995). The African culture and beliefs have not made matters easier. Abosi and Ozoji (1985) found in their study that Nigerians in particular and of course, Africans in general, attribute causes of disabilities to witchcraft, juju, sex-linked factors, God /supernatural forces." (Retrieved from http://dsq-sds.org/article/view/3197/3068.)

I always find such examples fascinating, as there are distinct differences from our culture. Transcendence, or the "combination of refusing to idealize normality, adopting a spiritual/philosophical orientation to the disability, and 'embracing the experience'" (p. 375). To some extent I can relate to this term, as I believe that the Christian should accept all humans for their intrinsic worth, nurture relationships and value them, regardless of disability or not. This is what Jesus would call us to do, and is what God has, in part, designed us for.

What is a "Good" Response to a Disability?

According to Smart, the three categories of response to disability are:
  1. Cognitive - how one chooses to view or think about the disability
  2. Behavioral - active mastery of the disability; compliance with treatment regimens; seeking out social support; returning to work; and actively fighting against the stigma and prejudice of society
  3. Affective - how the individual feels about the disability and how PWD manages emotions

I found this interesting in that these are the three aspects of response to disability that I would have anticipated prior to taking the course. This may be related first to my medical background and my close interactions with PWD. I thought Smart's description of PWD need to be "capable of tolerating a degree of ambiguity" interesting, as I find there is very little in life that is definitive. What is the saying, the only thing that one can be certain about is paying taxes and death? I don't this is unique to PWD, but a common (universal) principle.
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What is a "Poor" Response to a Disability?

I was a bit taken aback by the title and content of this section. The idea that one would criticize PWD as having a "poor" response seems no different than the criticism of other choice words Smart lists throughout the text. I have more of a philosophy of meeting someone where they are at. I feel like Smart is categorizing where she is critical of this approach in earlier chapters.
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Reflection Question: How have you seen a person respond to a disability? What things that Smart talks about in Chapters 7 & 8 have you seen? Have you seen a PWD achieve transcendence, explain the power in transcendence in their life.

I have seen numerous disabilities, primarily involving those related to neurodegenerative diseases such as essential tremor, Parkinson’s, Lewy-body disease, multiple sclerosis, amyotrophic lateral sclerosis and multiple system atrophy. I will discuss what I have seen collectively rather than discussing one individual case. That way, there will be a better representation of PWDs. I did not see powerful examples of an individual’s perception of the cause of their disability being related to their culture (upbringing or identification). While I saw, at times, a diverse population, it was not the case with the neurodegenerative diseases. These seemed to correlate with a similar race, gender and ethnicity. I may, though, see a correlation with the “American” culture, with its focus on beauty, strength, fast pace and able body. I am continually in awe when Smart and the other resources in this course state that most of those with disabilities would, if given the chance, maintain the status quo (i.e., keep their disability). I cannot think of one patient who would have not chosen to be able bodied. This may be related to the fact that neurodegenerative diseases tend to affect people later in life (the fifth decade on more commonly); however, I also have treated patients with CP, spinal cord injuries, torticollis and other physical disabilities that occurred congenitally or at a young age. I feel as even these patients would answer the same as the ones with neurodegenerative movement disorders.

Transcendence is something that I can speak to greatly. I feel as if my patients relied on their faith to overcome obstacles and to further identify themselves. However, I feel as if they had this faith beforehand and that they applied this faith to other areas of their life. I had one patient with multiple sclerosis that happened to be very active and engaged in the community as a Mary Kay consultant. I saw her prior to her being given her medication options. We found that she had a severe gluten sensitivity. Whenever she stayed away from gluten, her symptoms (paresthesias, pain, limited movement and imbalance) improved. It was such a dramatic change, and she was so comfortable with communicating with the public, that she became interested in educating others with multiple sclerosis as well as celiac disease. This would be somebody that was considered to be transcendent, according to Smart’s description, because she used her experience(s) to aid other individuals with chronic disease.

Environmental influences can greatly impact PWDs. The socioeconomic status of the patient can influence access to (the degree of) health care. I had another patient with multiple sclerosis who was wheelchair bound with inability to transfer. He likely needed a personal care attendant and more financial support. He had difficulty with basic hygiene, and his nutrition was severely lacking. As an example, when he arose from the table, he left flakes of skin. This could have been at least influenced by taking omega-3 fatty acids, vitamin D and probiotics. However, he was on Medicaid, unemployed, and was unable to afford supplementation. On the flip side, I had a patient with ALS that was very wealthy. He had numerous appointments with specialists, osteopath who administered IV glutathione and other vitamins, chiropractic, massage, speech therapy, and physical therapy. He also went down to Florida every 6 months to see a premier specialist in natural care options for ALS. His finances were also supported by veterans benefits, as there is a correlation to those that serve with the military and acquisition of ALS. His condition continued to decline, but likely at a much slower rate due to the benefits of his numerous therapies. He was also healthy in every other way. He had family support, whereas the previous patient did not. I think this had a great influence on the number of “happy” times the ALS patient had as compared to the MS patient.

I believe that all my patients with disabilities responded in positive cognitive, behavioral or affective ways. The MS patient in the wheelchair did not appear to “cognitively restructure” or have an affective response. He was depressed regarding his situation. He did not seek alternative meaning with relating to others, engaging in an alternative activity or transform “from comparative to asset values”. However, he was compliant with health care management plans and generally wanted to feel better. The ALS patient maintained his weekly Friday night steak dinner with his spouse and biweekly “outings” with his golf buddies (he rode in the cart while they golfed). He engaged in social interactions. However, the affective response showed his struggle. He would get frustrated that he had no way to communicate (he couldn’t speak or write) and had to rely on the decisions of others. He also was compliant with treatment regimens. However, quite honestly, his compliance came from wanting to please his wife; he loved her dearly. If it was just him and he did not have family support, I believe he would not have been compliant. I actually will go a step further and think that he would have given up altogether.

On the other side of the spectrum is those PWDs with somatization and malingering. These disorders are taught with some emphasis in school. There have been times where I suspected malingering, and performed several orthopedic tests to confirm or deny this suspicion. I have never confirmed that a patient was a malingerer. However, these same patients likely had somatization, in part contributed by the many doctor appointments and home health care they need to participate in. In these cases, I would attempt individualized stress reduction techniques and investigate further social support networks.