crown CU Home > Libraries Home
Columbia Center for Oral History Portal >

Oral history interview with Richard Johnson, 1991.

Creator: Johnson, Richard
Project: Hemophilia oral history collection.
(see all project interviews)
Phys. Desc. :Transcript: 104 pages Sound recording: 4 sound cassettes
Location: Columbia Center for Oral History
Full CLIO record >>

Scope and Contents

Childhood in inner-city Philadelphia; early experiences with hemophilia; family history of hemophilia and lack of medical treatment due to religious beliefs; early "remedies" such as peanut butter; risk-taking behaviors as a child; apparent differences in access to treatment due to race/ethnicity; childhood experiences with hospitalization and lessons learned as a result; discrepancies between experiences at a school for the "handicapped" and experiences in the outside world; dealing with hemophilia as a member of a lower socio-economic class; financial assistance from local hemophilia chapter; childhood rebelliousness; early experiences with home care; consequent increase in school attendance and physical activity; experiences in high school; difficulties in attending college due to hemophilia; effects of low self-esteem among minorities and among people with hemophilia; experiences with pain and with pain medication; apparent discrimination against African-Americans in the treatment of hemophilia - e.g., the belief that hemophilia is the "royal disease" and consequently doesn’t exist among minorities; problems getting health insurance as a person with hemophilia; involvement in a study regarding mental health and frequency of bleeds; experiences with meditation and hypnosis; disability due to frequency of bleeds and pain; exposure to HIV via blood products; lack of information regarding treatment options; involvement with National Hemophilia Foundation’s (NHF) Chapter Outreach Development Program (CODP) and education of minorities regarding risk reduction and hemophilia issues in general; issues regarding race and class in treatment of hemophilia; advent of Men’s Action Network (MANN); difference between a "population" and a "community" of people with hemophilia; differences in treatment and services received based on economic status of people with hemophilia; family relationships among people with hemophilia; lack of social services for minority people with hemophilia; methods of empowering minority people with hemophilia; differences in care of hemophilia over time; differences in HIV treatment between people with hemophilia and others


Access Conditions

Copyright by the Trustees of Columbia University in the City of New York, 2016

Using this collection

Columbia Center for Oral History

Columbia University
535 West 114th Street
801 Butler Library, Box 20
New York, NY 10027
(212) 854-7083


Columbia Center for Oral History