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Social & Policy Environment

Issues Related to the Social and Policy Environment

Many limitations are invisible, variable or episodic.

When survivors do not self-identify and self-advocate about their needs many providers do not know what to do and may miss opportunities to engage with individuals in a way that re-defines the survivor’s expectations about what providers are like and what they can offer.

Providers may be surprised by the limits a person expresses, for instance, the inability to pick something up when the person looks physically healthy. Like anyone else, providers can be inflexible in their conception of disability. They may expect conditions to be static or progressive, rather than simply variable. This is particularly pertinent for people with limited stamina and fatigue.

People with non-apparent and/or unpredictable limitations often face resentment from others when they suddenly cannot participate in an expected or “normal” way. It is difficult to sustain program flexibility but it gets easier if the accommodations proves effective

Examples of Problems

A provider expects a one time assessment of a survivor’s limitations will solve access problems. The provider does not realize that limitations in stamina are often variable, not static. As the survivor's anxiety increases, her symptoms change and her accessibility needs change. However, the provider has not made any provisions to accommodate the changing needs.
During a group meeting, the group leader leads a refresher exercise. After demonstrating to everyone clapping to the right, to the left, and to the center, she then repeats each clap with a yell. She tells everyone, “Okay, your turn. Let’s all stand up now and do it together.” One survivor doesn’t participate. The group leader points out the one non-participant and makes a joke about her separation from the group.

Suggested Solutions

A survivor with a serious limitation of stamina may want to lie down during meetings. Her mental functioning may be fine but her body requires rest in order to be able to participate. Invite the survivor to suggest what would work for her.
Providers need to provide flexibility to those who at the last minute cannot attend a meeting due to limited stamina. This may take the form of providing meeting notes or having someone verbally review the meeting with the survivor.
Stress and anxiety can precipitate an episode of fatigue. Fatigue affects a person’s ability to concentrate during conversation, retrieve words while speaking, or retrieve an entire thought. Jane Doe, Inc. recommends each person who uses your services should be asked for any known behavioral or emotional tendencies when in crisis. Ask for the person’s own advice about what works to alleviate her response to crisis. Create an accommodation plan for the onset of symptoms and also take any preventative measures that are learned. Allow flexibility in any activities, like support groups, where the person may want to lie down but still participate. Consider options of chores that she can manage.
Your program will need to be flexible to accommodate a person with functional limitations related to stamina and fatigue. Some of the accommodations you may need to be prepare
She may use a service animal and/or have a wheelchair or scooter that she sometimes uses.
She may need more frequent or longer breaks.
She may require a couch or lying on the floor to talk from a horizontal position.
Returning to her room for short naps as needed may be her best method of staying engaged.
She may need fan/air conditioning control or extra heat on extreme hot or cold days. She may not be able to travel outdoors on certain days.
She may not be able to do repetitive tasks like sweeping.
She may not be able to carry even light things.
Distances pose barriers. Survivors with fatigue may be unable to walk to programs or services that are not close to public transit or where there is no accessible parking. Survivors may incur extra transportation costs if they have to take taxis to access your programs or to access activities like work, courts, and community life from a shelter location. Allow extra time if accompanying a survivor with fatigue to appointments.
Community workshops should post “if you need a ride, contact …” on all flyers and advertising to encourage people with limited stamina that options exist for them to attend. Accommodations might include agreeing to meet at another location, or having a volunteer provide a door-to-door pick-up service.
To provide accommodations to employees see the Job Accommodation Network It is an extraordinarily valuable resources for understanding accommodations for a very wide A to Z accommodation information series for the person’s particular condition. Also examine the information provided for Chronic Pain, Chemical Sensitivity or Environmental Illness, Chronic Fatigue Syndrome, Cognitive Impairment, Depression, Fibromyalgia, among others.

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