[nfbwatlk] Research participation request

Fri Jun 3 01:18:30 UTC 2011

Mr. Frye,

I sincerely apologize that you had such a negative experience with my
research survey. I am genuinely saddened to hear of your experience because,
truly, my intentions with this research are the opposite of the sentiments
you expressed in your email. I am passionate about this subject and believe
that my findings will actually allow me to highlight the fact that many
people who are blind and visually impaired cope quite well. In fact, I
believe I am an individual who has not let my visual impairment impact my
goals in life.   

The aim of my research is to focus attention on  the fact that individuals
who are blind or visually impaired have a vast array of methods of coping,
whether that be through religiousness, spirituality, social support from
family, friends, and others, humor, etc., and many of the methods of coping
are highly positive and effective. This positive focus is necessary to
continue to debunk the negative stereotypes that you mentioned in your
email. However, I also endeavor to give voice to those individuals who may
have a harder time coping with their blindness or visual impairment as such
findings may help clinicians who could work with individuals having
difficulty to move differently in the world so they can successfully achieve
what they desire. 

As you noted, people who lose their vision later in life may grieve that
loss; and therefore, there may be some differences between the experiences
of those individuals and those of us who have been blind or visually
impaired from birth. This study will allow for the exploration of some of
these types of issues, which is why I have sought a broad sample of
individuals.

I would welcome the opportunity to communicate with you further--to hear
more details regarding your specific feedback and to learn about the
particular questions that were of concern for you.  Please do consider
contacting me directly so that we can continue a conversation about these
issues.  Thank you for your email and for expressing your concerns.  

Allyson Matt  

-----Original Message-----
From: Frye, Daniel [mailto:Daniel.Frye at ed.gov] 
Sent: Thursday, June 02, 2011 12:40 PM
To: NFB of Washington Talk Mailing List
Cc: ally.matt0 at gmail.com; servaty at purdue.edu; mriccobono at nfb.org
Subject: RE: [nfbwatlk] Research participation request

Allyson:

As promised, and despite my initial reservations about the euphemism for
blindness that you employ in your study, I have completed this survey. I
must confide that I have never participated in such a patronizing, biased,
and presumptuous questionnaire in my life. I am confident, Allyson, that you
have embarked upon your academic career with the intention of positively
influencing the world in which you and others live, but I need you to
understand that the judgments inherent in the questions you asked about
blindness reflect an attitude about the absence of vision that, no matter
what you do, and unless the questions are substantially changed, will cause
the blind community considerable harm.

The questions in your survey are clearly the product of a social
conditioning that has taught you and others to anticipate that blind people
feel awful about not seeing. To be sure, some blind people (particularly the
newly blind) grieve when they lose vision, but in general blindness is not
perceived by most who are blind as a tragedy. Most well-adjusted blind
people will acknowledge that certain aspects of blindness are inconvenient,
but few of us would subscribe to the depressing assumptions that are
suggested by the questions in this survey. I don't know what your study
endeavors to achieve, but even the most positive answers to a survey with
such leading questions, promises only to affirm the lowest expectations for
adjustment to blindness and will give credence to beliefs that many of us
hoped were long gone. One stereotype strongly suggested by this survey is
that a substantial correlation between blindness and reliance on religion as
a coping mechanism may exist. I cannot tell you how troublesome this
assumption is on so many levels.

I urge your advisor to evaluate further the harmful nature of these survey
questions for scientific efficacy, academic integrity, and compliance with
ethical standards to avoid doing significant harm to the study participants
in your survey. I worry that some people who voluntarily participate in this
survey will buy into the negative assumptions that your questions suggest
are inherent in blindness. At a minimum, this survey needs to be modified to
narrow the potential target of blind people you want to hear from, since
many of your questions suggest that blindness is a new experience. Equally
important is the need to revise the questions to take into account the
diversity of visual acuity that exists by including a Not Applicable option
for many of the questions that presume the existence of some sight.

At present, the only reason I can think of wanting to take drugs and alcohol
as a coping mechanism is to forget the questions in this study and not to
cope with the hell that this survey presumes blindness must be. If it would
be useful, I'd be pleased to review the questions with you in detail to help
you identify the specifics of my concern. This offer is about as
constructive as I can offer to be with respect to this survey at this stage.
In the absence of a comment form in your survey, I thought the foregoing
should be considered.

Daniel B. Frye, J.D.
Management and Program Specialist 
Randolph-Sheppard Programs
U.S. Department of Education 
Office of Special Education 
and Rehabilitative Services 
Rehabilitation Services Administration 
550 12th Street, SW, Room 5023 
Washington, DC  20202-2800 
(202) 245-7308 office 
(202) 245-7591 fax
(410) 241-7006 mobile
daniel.frye at ed.gov

-----Original Message-----
From: nfbwatlk-bounces at nfbnet.org [mailto:nfbwatlk-bounces at nfbnet.org] On
Behalf Of Ally Matt
Sent: Wednesday, June 01, 2011 3:43 PM
To: nfbwatlk at nfbnet.org
Subject: [nfbwatlk] Research participation request

Hello,

Dear Listserv member,

            I am a doctoral student at Purdue University, and I am working
on my doctoral dissertation project under the direction of my advisor, Dr.
Heather L. Servaty-Seib (servaty at purdue.edu). My study is focused on
gathering information from people who have experienced a vision-related
disability and who are between the ages of 18 and 64 years of age. I hope to
gather information about the ways people with vision-related disabilities
cope with their disability and how these methods of coping may relate to
people's ability to perform basic daily activities, sense of overall
satisfaction with their life, and interaction with the broader community.   

            For the purposes of this study, I am looking for people who have
experienced a vision-related disability. This means that you have a
vision-related disability that substantially limits one or more major life
activities including caring for yourself, performing manual tasks, seeing,
learning, reading, or working, that there is a record of your vision-related
disability, or other people perceive you as having a vision-related
disability.

            If you would like to participate in this important work, please
click on the link below or paste the link into your web browser to be taken
to the survey. The survey will only take 20-30 minutes of your time, and you
will have the opportunity to enter a drawing for a $25 Audible.com gift card
with 1 in 100 odds. 

Survey link

 <https://www.surveymonkey.com/s/vision-related-disability-survey>
https://www.surveymonkey.com/s/vision-related-disability-survey

Thank you for considering participating in this study.

Allyson Matt

Doctoral student, Counseling psychology

Purdue University

ally.matt0 at gmail.com     

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