Study Notes on Disability Advocacy from Matt Berwick Interview

Introduction

  • Speaker: Dr. Rachel Kallem Whitman

  • Interviewee: Matt Berwick, a disability advocate in the community

  • Purpose: Enhance understanding of the disability community in Pittsburgh through interviews sponsored by a Duquesne University Mission Grant.

  • Visual Descriptions:

    • Dr. Rachel: A white woman, wearing a black-and-white striped shirt, with brown curly hair and pink fuzzy earrings, sitting in front of three windows.

    • Matt: A white male, short brown hair, wearing a gray shirt with an orange and blue bow tie, sitting in front of a bookshelf with curling pins on a plaid banner.

Background of Matt Berwick

  • Current Roles:

    • Program Manager for Disability Accommodations and Clinical Services at UPMC Health System's Disabilities Resource Center.

    • Part-time lecturer at the University of Pittsburgh.

  • Professional Experience:

    • Almost a decade in disability services, including roles on local, state, and national boards.

    • President of the United Spinal Association of Western Pennsylvania.

    • Previous work in higher education focusing on youth transition services.

  • Education:

    • BA in Elementary Education.

    • MA in Adult Learning and Training.

  • Community Involvement:

    • Active participant in the Pittsburgh disability sports community.

Personal Background of Matt

  • Disability: C5-C6 spinal cord injury affecting mobility from the chest down.

  • Mobility Aid: Uses a manual wheelchair with a power assist.

  • Independence: Drives to work, actively participates in sports, enjoys hobbies like racing RC cars, and has a passion for Disney.

  • Family: Describes himself as a family man with a brother, sister-in-law, and niece.

Daily Role as Program Manager

  • Primary Responsibilities: Ensure healthcare accessibility for patients with disabilities at UPMC.

    • Educate and train staff about disability accommodations.

    • Consult with patients over the phone or in person regarding needs.

    • Assess policies for cultural competence in terms of disability.

    • Promote person-first language:

    • Person-First Language: Emphasizes the individual before the disability (e.g., "person with a disability").

    • Identity-First Language: Recognizes disability as part of the individual's identity (e.g., "disabled person").

  • Examples of Accommodations:

    • Interpreters for communication needs (live, video remote interpretation).

    • Modified medical equipment (e.g., pressure relief mattresses for individuals with spinal cord injuries).

    • Accessible facilities (ADA-compliant rooms).

Concept of Universal Design

  • Definition: Universal design refers to creating environments that are accessible to everyone, irrespective of their abilities.

  • Examples:

    • Grocery store entrances without steps benefit everyone, including parents with strollers.

    • Television commercials with embedded captions enhance accessibility for both Deaf individuals and those who benefit from captions in noisy environments.

Reasons for Advocacy Work

  • Personal Motivation: Transitioned from elementary education to focus on meaningful, sustainable work in disability advocacy.

  • Legislative Background:

    • Rehabilitation Act (1973) and Americans with Disabilities Act (ADA): Laws that protect against discrimination and require reasonable accommodations.

    • Section 504 of the Rehabilitation Act: Prohibits discrimination within federally-funded programs.

    • ADA (1990): Mandates accessibility in public accommodations, ensuring inclusivity for people with disabilities.

Challenges in Advocacy

  • Ongoing Efforts: Despite legislative progress, there remain architectural barriers and a need for continued advocacy.

  • Understanding Reasonable Accommodations:

    • Definition: Accommodations provided must not fundamentally alter the service or impose an undue burden on the organization.

    • Examples: ADA-compliant parking is reasonable; however, expecting personal transportation services may be unreasonable.

Teaching Philosophy and Class Focus

  • Course: Psychology and Sociology of Disability offered at the University of Pittsburgh.

  • Topics Covered:

    • History of disabilities.

    • Importance of understanding the broad spectrum of disability experiences.

    • Interaction with individuals with disabilities through interviews.

  • Curriculum Goal: Equip future healthcare professionals to support individuals with disabilities effectively.

Curling as an Inclusive Sport

  • Sport Overview: Curling is played on ice using stones weighing approximately 42 pounds. It originated in Scotland.

  • Inclusivity: Stresses that curling can be played by individuals with disabilities using wheelchairs or adaptive equipment.

  • Inter-abled Participation: Individuals with and without disabilities can compete together without disadvantage.

  • Personal Achievement: Highlights a success in winning a league championship with an inter-abled curling team.

Rewarding Aspects of Their Work

  • Pre-Arranged Accommodations: The LUHU program (Let UPMC Help You) allows patients to arrange accommodations in advance.

  • Impact on Patient Experience: Patients sharing positive feedback about accommodations can signal successful advocacy and effective service.

Importance of Advocacy and Civic Engagement

  • Advice for Students:

    • Understand the basics of ADA standards and disability rights.

    • Engage with local advocacy efforts and legislators to promote accessibility and support changes.

    • Recognize the importance of civic participation, including voting, to influence policies affecting individuals with disabilities.

Conclusion

  • Key Takeaway: Education on disability and advocacy is crucial for building a more inclusive society, emphasizing the power of listening to and amplifying the voices of those with disabilities.