Report of the Respectful Language Workgroup

Pursuant to Chapter 62, 123rd Maine State Legislature

March 6, 2008

This report also available as a Word document [312Kb].

Please view our Terminology Table for terminology to be Avoided/Replaced and Recommendations for Acceptable Words/Phrases table [as a Word documment].

Additional information available from the
Maine Developmental Disabilities Council 207-287-4213
or ehowes@maineddc.org

1. Background

As directed in a resolve passed in 2007 by the Maine Legislature1, the Maine Developmental Disabilities Council (MDDC) formed a working group to identify words which currently appear in Maine statutes that convey negative and/or derogatory perceptions of people with disabilities, and to make recommendations for replacement terminology to be substituted when new statutory language is crafted to replace and/or add to existing laws. A copy of the Resolve is included below.

MDDC sent invitations to participate in this work group to representatives of public and private agencies which are involved in advocating, overseeing and/or providing services and supports for persons with disabilities. Individuals with disabilities were also encouraged to participate. The working group met twice as a large group, with participants including representatives of the Maine Departments of Education, Labor, and Health and Human Services, along with a variety of advocacy organizations and self-advocates. Several smaller meetings were held as well, with representatives of specific sub-groups, to discuss terminology of concern to their groups, along with recommendations being circulated via email for additional comment. A listing of the participants in the working group is included with this report below.

The impetus for this legislation and the working group’s recommendations for new terminology to be used in State statutes and regulations derived in particular from concerns expressed by self-advocates - notably members of the statewide self-advocates’ organization, Speaking Up For Us - regarding the usage of the term “retarded” or “mentally retarded.” As explained in testimony before the Joint Health and Human Services Committee, individuals with developmental disabilities are very frustrated with the use of these terms in everyday language, given how these words have evolved in common usage to become stigmatizing labels used in cartoons2 and by comedians and others to make fun of people.

Many of the terms used in State laws and rules became common usage across the country during earlier periods of time when people with disabilities were regarded as individuals to be pitied, feared or ignored. They were portrayed as helpless victims, repulsive adversaries, heroic individuals overcoming tragedy and charity cases dependent upon others for their care and wellbeing. Individuals with developmental disabilities, whether cognitive or physical in nature, were most often segregated in large state-run institutions with little more than custodial care, and often deplorable living conditions.

Advances in academic and professional understandings of the capacities of individuals with developmental disabilities to learn and increase their levels of intellectual and adaptive functioning have played a critical role in generating efforts toward deinstitutionalization and provision of community supports and opportunities. Maine is notably ahead of many other States in the country, having closed its only state-run institution, and developed a community-based system of services for individuals who would otherwise be served in institutional settings.

Much has changed over the past thirty years in the United States, with disability activism and expanded coverage of disability issues encouraging changes in public awareness and knowledge, and increased opportunities for individuals with disabilities to participate as respected and contributing members of their communities and society in general. People with disabilities continue to focus attention on difficult issues that affect their quality of life, such as accessible transportation, housing, affordable health care, employment opportunities and elimination of discriminatory practices that limit their participation.

To further the goals of full inclusion and equal opportunities for persons with disabilities, there is strong sentiment that new terminology is needed to focus on each person as an individual, and not emphasize a disability. Efforts are being made across the country to have labels which contribute to negative stereotypes and focus on only one aspect of the whole person removed from State laws and rules, and usage in government programs. (please see below)

2. Findings

The working group identified a list of more than 90 words and phrases in Maine Statutes that are used as “labels” to define individuals and groups to whom the pertinent section and/or Title applies.

There was agreement that the basic principle of “people first” language should be used in considering any recommendations for words/phrases to replace existing terminology. In essence, the emphasis should be placed upon the person, and a disability should not become through labeling the primary, defining characteristic of that individual, but be seen as merely one aspect of the whole person.

There was also agreement that no reference should be made to any disability in usage, unless it is relevant to the topic addressed. In the same way that racial identification is eliminated when it is not significant, terminology calling attention to any disability should also be avoided if unneeded.

Through an initial sorting of the list of terms to be discussed, the group chose to set aside and not consider those terms that do not specifically address any disabling condition. However, given the group’s agreement that labeling individuals and/or groups based on a single characteristic does not follow the principle of “people first” language, it was agreed that this report would mention (without any recommendation for changes) some of the terms that were initially identified but determined to be outside the purview of this working group. Those words/phrases included: disadvantaged, gifted and talented students, “the poor”, physically abused children, needy individuals, needy persons, and indigent client.

There are no recommendations included in the report for any changes in terminology related to individuals who are “deaf, hard-of-hearing, or hearing impaired”, or any type of vision impairment. Although input was solicited from those groups, there was not adequate response for the working group to feel comfortable in formulating recommendations. However, there was consensus that the same general recommendation should apply to these groups; i.e. any time terminology referring to a specific disability or group of persons with that disability is going to be used in legislation or draft rule, representative members of the group should be consulted to determine appropriate and respectful wording is used.

The working group also acknowledges that there is a long history of replacing stigmatizing and pejorative terminology for individuals with various types of disabilities with newer terms that in turn become negative and stigmatizing in their own usage. It is therefore highly likely that any new terminology selected to replace phrases such as “mental retardation” may in the future become outdated as well. It will be important for there to be ongoing communication with the disability community to assure that, to the greatest extent possible, terminology is updated when possible to assure that State statutes and rules model the respect and recognition of individual rights and abilities that are due to everyone who lives in Maine.

3. Recommendations

The working group reviewed and made recommendations for replacement terminology for more than 60 words and phrases that currently appear in Maine statutes. Those recommendations are included here.

The working group also reached consensus on the following general recommendations:

• No reference should be made to any disabling condition unless it is relevant to the issue being addressed.
• No changes in terminology should be made that might negatively impact individual eligibility for services.
  
  For this reason, the term “mental retardation” will have to be used in some places in State statute and rule when there is a link to the federal Medicaid program, which uses this term.
• No changes should be made in terminology that might have a negative impact on individual rights or otherwise cause unintended harm to any individual or group.
• In all cases, People First language should be used, with descriptive terms used as adjectives rather than nouns. Referring to people as “the disabled”, “the retarded”, etc. should be avoided at all times.
• Avoid negative or sensational descriptions of a person’s disability, such as “suffers from," “afflicted with”, or “a victim of”.
• A process should be established for ongoing communication with representative members of the disability community to review terminology that is included and recommended in this report, to determine if any changes should be made to reflect more current usage.

Resolve, To Convene a Working Group To Review Statutory Language
and Propose Standards To Ensure the Use of Respectful Language

Sec. 1 Convene working group. Resolved: That the Maine Developmental Disabilities Council, referred to in this resolve as “the council,” shall convene a working group to review the terminology that is currently contained in the Maine Revised Statutes to refer to persons with disabilities. The council may propose standards to be used prospectively by the Revisor of Statutes when preparing bills that enact or amend legislative language referring to persons with disabilities. In convening the working group, the council shall invite the participation of representatives of the Maine Disability Advocacy Coalition and other interested parties. In preparing its recommendations, the working group:

• 1. May identify terms that it recommends be designated for substitution and may recommend replacement terms;
• 2. Shall ensure that any proposal for terminology changes reflects a positive approach to persons with disabilities;
• 3. Shall include in any proposal language that ensures that terminology changes may not be implemented if the change would alter or render ambiguous the substantive meaning of any statutory unit;
• 4. Shall ensure that any proposed language changes are not in conflict with or prohibited by federal requirements; and
• 5. May recommend that each department, bureau and agency of State Government, when adopting or amending its rules and policies and when publishing or republishing its publications, incorporate the standards proposed; and be it further

Sec. 2 Report and recommendations. Resolved: That, by November 1, 2007, the council shall report to the Joint Standing Committee on Health and Human Services the findings and recommendations of the working group, including any necessary implementing legislation; and be it further

Sec. 3 Authority for legislation. Resolved: That, after receipt and review of the report and recommendations submitted pursuant to section 2, the Joint Standing Committee on Health and Human Services may submit legislation to the Second Regular Session of the 123rd Legislature.

Workgroup on Respectful Language

Members

People First Language (PFL) Legislation and Policies in the United States as of 2007