Getting Comfortable with Disability
What Social Workers Should Know
Nancy D. Miller, LMSW, Executive Director, VISIONS/Services for the Blind and Visually Impaired
Unlike many other issues that we confront as social workers, any one of us may join the group of people with disabilities. We are one disease, one accident, one injury away from becoming disabled ourselves. All of us will experience disability. A family member may become disabled. We may serve clients with disabilities in our agencies or in our practices. We may come into contact with a person with a disability in the communities we serve or live in. Or like me, your child may be born with a disability and then acquire another as an adult.
I am a licensed social worker, the Executive Director of VISIONS/Services for the Blind and Visually Impaired for 21 years, a Social Work Pioneer, with 34 years of experience working with people with disabilities and I learn new information about and from people with disabilities every day. I hope this issue of Currents will increase your awareness and knowledge of disability, the issues people with disabilities confront every day and the positive and important role you can play.
Who do I mean when I speak of a person with a disability? One of the myths about disability is that it is easy to identify a person with a disability. In fact, many disabilities are hidden, for example a person with “low vision” or partial sight or hearing loss. Another myth is that living with a disability is experienced in a similar way by everyone. In fact a person who is paralyzed may have had a stroke – the leading cause of paralysis, sustained a spinal cord injury – the second most common cause, or developed multiple sclerosis. Each of these conditions is very different and will affect different people in different ways.
Definitions of disability vary. The Americans with Disabilities Act (ADA) of 1990 is considered pivotal civil rights legislation since it prohibits discrimination. The definition of disability in the ADA has been challenged on many occasions, all the way to the Supreme Court. The ADA protects anyone with a physical or mental impairment that substantially limits one or more major life activities, anyone with a record of such impairment, or anyone regarded as having such impairment. The categories not only protect a person who is obviously disabled, but also anyone who appears to have a disability. The Social Security Administration definition of disability is based on an inability to work.
Although the definitions are important for benefits entitlement and public policy, in daily life, many people with disabilities are concerned primarily with functioning which is reflected in the need for systemic physical and attitudinal changes to create a disability-friendly environment. Some of the major issues are identified and discussed below. Within the physical environment, provisions for accessibility must be made; persons with disabilities should be able to get into and out of an apartment or restaurant, safely cross the street, and use public transportation. Adaptations and accommodations as also needed, such as Braille or large print signs for people with vision loss and strobe light fire alarms for people with hearing loss. Shifts in the attitudes and expectations of others go a long way in shattering myths and stereotypes. Keep in mind that everything that persons with disabilities do has been learned through specialized training or trial and error. It is most helpful to ask persons with disabilities if they need help, without assuming that they do or that you know what help they need. Others’ expectations often run counter to the reality that persons with disabilities can work, graduate from college, raise a family, or be social workers. Furthermore, these expectations act as barriers if others offer unwanted pity or attempt to prevent persons with disabilities from trying, even if they fail. Finally, persons with disabilities have rights to vote independently without assistance, understand the implications of and receive adequate and appropriate medical care, and live and grow old at home rather than in a nursing home or institution.
I co-founded and was the Founding President of the Disabilities Network of NYC (DNNYC) and the New York Vision Rehabilitation Association (NYVRA). These coalitions are unusual in that they were created to be inclusive in their memberships. Anyone who cares about disability issues and wants to improve the quality of life and quality of service delivery is welcomed. Members include professionals working in the field of disability, consumer groups, advocates, parents, educators and people with disabilities themselves. Why this model? Disability tends to isolate people. Disability sets up false divides of the “included” and the “excluded.” Disability is used as a reason to limit choices. Yet we know as community organizers that strength is in numbers, as well as in the persistence to create a system that is fair and just, promoting equal opportunity and real choice. For people with disabilities, this status has not yet been achieved for all.
There are an estimated one million persons with disabilities of all ages residing in New York City. Yet despite the large number, the attitudes and behaviors of the general population, and social workers specifically, toward disability include fear, discomfort, avoidance, stereotypes and incorrect assumptions. I have often received a call from a school of social work about accepting a student with vision loss for placement at VISIONS even when the student has no interest in working with people who are blind or visually impaired. I have also receive a referral of a person who is blind from a colleague when the expressed need has nothing to do with the person’s vision loss.
A pet peeve of many people with disabilities is inaccurate use of language. Social workers do not always use or know politically correct language. Person-first language is preferred, such as “persons who are blind” instead of “the blind” or “persons who are Deaf” instead of “the Deaf.” A person with a developmental disability is preferred language rather than the mentally retarded. A wheelchair user is preferred language to “confined to a wheelchair.” In fact, a wheelchair expands the world for a person with mobility impairment. The United Spinal Association has an excellent disability etiquette guide on their website (www.unitedspinal.org.)
When writing about disability, the media often reinforces stereotypes. The media generally covers stories of exceptionally talented people with disabilities or presents circumstances that evoke pity. Neither is an accurate portrayal since people with disabilities are as diverse as the general population. It is also true that disability is more common in communities that lack access to adequate health care. There is a higher prevalence rate of disability for people living in poverty. Some diseases that cause disabilities, such as diabetes and glaucoma, which can lead to vision loss, are more common in communities of color.
What are some of the problems or issues that a person with a disability would face that require social work intervention? This is a question frequently expressed by persons with disabilities, their families, schools or workplaces. For example, within family systems and school settings, children with disabilities may be overprotected or victimized. Siblings may be saddled with being responsible for the disabled sister or brother. Parents may need help with advocating for an appropriate educational setting or support services for their child with a disability. Scapegoating may occur in school or in families.
Adjusting to or coping with a congenital vs. adventitious (acquired) disability can also present the need for social work services. A parent or a spouse or the persons themselves may reach out to a social worker for counseling or may also turn to a social worker to help understand or access benefits and other resources. Dysfunctional behavior (uncontrolled anger, depression, withdrawal, acting out, etc.) may lead to a social work referral. Cultural taboos may interfere with acceptance of a disability and lead to the need for social work intervention. For many individuals, adjusting to disability is adjusting to loss and it may require stages of coping to enable the individual and/or the family to accept the situation and move on. Finally, as we age, disability is more common and often this stage of life is accompanied by negative attitudes about disability.
Social workers use their assessment skills to help the individual define the problem, understand and accept it. A person who is newly disabled may need to focus on accepting the new me. However, it is important to note that the need for social work intervention may have nothing to do with the disability. A person with a disability may be depressed for an entirely different reason, or may experience life changes or conditions that social work intervention can assist with such as death of a child or spouse, loss of a job, mental illness, anxiety or addiction, to name just a few. The challenge is to both consider and look beyond the disability in completing a psychosocial assessment and determining the goal of the work.
Social workers are often not alone in helping a person with a disability function more effectively or better manage their lives at home, at work or in the community. Potential partners in the work of behavior change include the persons with a disability themselves, family members, teachers, physical and occupational therapists, orientation and mobility instructors and vision rehabilitation therapists (the specialists in the field of vision loss), vocational rehabilitation counselors, audiologists, speech therapists, optometrists, psychiatrists, nurses, doctors and other health professionals. These allies can also be recruited to effect systemic changes that break down attitudes that discriminate, isolate and marginalize people with disabilities.
I have come to strongly believe in specialized services. Having worked with people with vision loss since 1971 and particularly older people with acquired disability, I am aware of the extraordinary capabilities of people who are blind. Other than flying a plane or driving a car, people who are blind can do everything as well as sighted people but in a different way. This is true of a person with any disability. Finding creative ways to help a person who is blind to accomplish and excel is based on solid education and competencies and definitely improves with practice. The more you teach, or counsel or train persons with particular disabilities, the better you get at it. For some advocates, this is a controversial opinion. To some, specialized is equated with segregated. As a mother, I know that my daughter’s life was saved by having her live in a specialized boarding school with other teenagers coping with similar disabilities and having social workers and teachers and administrators who understood her particular needs and individualized the help they offered.
So, the next time you are offered a social work student with a disability, say yes to the placement; you can teach and learn at the same time. If you are hiring, seek out candidates with disabilities. Take a course in disability policy, or join a Board of Directors of an organization serving people with disabilities. Volunteer with a disability organization. Learn American Sign Language or how to read and write Braille. If you attend a social work event in a venue that is not accessible, complain. The next time you see a person with a disability waiting on a street corner, ask if they need any help. Get comfortable with disability. You never know when it just might be a necessity for you.