[nfbwatlk] Research participation request

Mon Jun 6 12:20:38 UTC 2011

Allyson:

I'm just getting back to my office, but it's good to hear from you. Let's be in touch soon if you'd like to discuss this further. I have no doubt that you feel like this work is important. It probably warrants more discussion than can adequately be given to it via email at this time, but I'd be happy to chat. Suggest a time if you'd like to do this.

With Kind Regards,

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: Ally Matt [mailto:ally.matt0 at gmail.com] 
Sent: Thursday, June 02, 2011 9:19 PM
To: Frye, Daniel; 'NFB of Washington Talk Mailing List'
Cc: servaty at purdue.edu; mriccobono at nfb.org
Subject: RE: [nfbwatlk] Research participation request

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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