You're Here….Now What?
Making Self-Advocacy Work For You in Recreation Settings

By C. Amber Havens

What's worse? Planning a great outing with your family and friends at the local bowling alley only to find out that you can't get your wheelchair to the lanes or educating the owner of the local bowling alley about your disability and the accommodations you are entitled to by law, as a person who has the right to bowl? While finding out that a recreational hotspot is not accessible and doing nothing about it is a daily event for some people - others are taking the matter into their own hands to become their own advocate, to fight for what is legally theirs and to educate a public that often turns its eyes away from the civil rights movement of the disability community.

While the Americans with Disabilities Act (ADA) of 1990 addresses the way public and private agencies provide recreational opportunities to people with disabilities, there is no argument that there is a long way to go before many people are able to fully participate in and have their needs met by their choice of recreational pursuits. So…what do you do? Do you want to be the one who sits on the side-line, miserable because you can't get down to the bowling lane due to access issues OR do you want to take action so you too can enjoy the camaraderie of bowling a 79 with friends and family? The answer is to become your own advocate.

Self-advocacy simply means that you understand your disability, are aware of your strengths and weaknesses, and are able to tell others what you need to successfully participate in an activity, program, or event (Brinckerhoff, 1994; Hartman, 1993; Lynch & Gussel, 1996; Pocock, Lambros, Karvonen, Test, Algozzine, Wood, & Martin, 2002). This might sound complicated, but who knows what you need better than you? Who can represent you better than you? NO ONE!!! While the thought of disclosing personal information about yourself and your disability to a complete stranger might sound embarrassing, scary, or just uncomfortable, with practice you can become a trailblazer for accessible recreation facilities and services in your community that benefit not only you but others in your community who have disabilities. Now that you know what self-advocacy entails where do you start?

STEPS TO BECOMING A SELF-ADVOCATE

Know who you are and what your needs are.

What are your interests? Strengths and weaknesses? What is your disability? What types of accommodations or modifications do you need to successfully participate in the activity?

• Sheila loves to go camping. Sheila is independent, but this will be the first camping trip she plans all by herself for her and her friends. Sheila knows she can put up her own tent and fix her own dinner. Sheila utilizes a wheelchair to get around and will need an accessible campsite that is near an accessible bath house with a shower chair.

Know what you want and why you want it.

If you are planning a recreational outing, call ahead to find out if facilities are accessible (this is all relative to someone else's definition of accessible) and what types of services they offer. Ask questions.

• Sheila will call the park to reserve an accessible campsite and request that she be placed as close as possible to an accessible bath house. Sheila will ask if she can roll her chair into the shower and the toilet stalls. She will ask if there is a shower chair there or will she need to bring her own, etc.

Know what you are legally entitled too.

As a person with a disability, you have certain rights under the Americans with Disabilities Act (U.S. Department of Justice, 1990). These are your rights under the ADA:

1. Right to Participate: You have the right to participate in public and/or private recreation or leisure activities as long as you meet the essential eligibility requirements (which vary across activities).

2. Right to the Most Integrated Setting: You have the right to participate in the setting that will offer you the maximum extent of interaction possible with other participants both with and without disabilities.

3. Right to Reasonable Accommodations: You have the right to reasonable accommodations to meet the essential eligibility requirements, if the accommodations are necessary to enable your participation in the activity of your choice. Accommodations will be provided by the organizer of the service you are seeking to participate in.

   Accommodations can be considered unreasonable:

   a. if it would give you an unfair advantage in a competitive sport;
   b. the accommodation is too costly;
   c. too difficult; or
   d. would place an undue burden on the provider.

   Examples of reasonable accommodations are:

a. Changes in rules or policies
b. Interpreters or other aids for those who are deaf or hard of hearing
c. Braille for those who are blind
d. Wheelchair ramps for accessible entrances. Etc...


4. Right to Adaptive Equipment: You have the right to utilize adaptive equipment that will help you successfully participate in an activity.

   Examples of adaptive equipment:

a. Sport wheelchairs
b. Grip devices for holding art brushes or fishing poles
c. Mobility devices
d. Communication devices
e. Etc…

5. Right to Assessment or Evaluation: You have the right to not be discriminated against due to a perception of risk or strict application of safety policies and rules. Providers of recreation services will have to assess the risk of your participation, in addition to your abilities and experience in the activity of choice. This assessment will also consider reasonable accommodations. It is important to note that the provider should be applying this assessment to all potential participants (with and without disabilities).

Achieve Your Goal

Now that you know your rights as a person who has a disability, here are some ideas to help you achieve your goal of becoming your own advocate and taking charge of your recreational pursuits.

1. Assert Yourself: This is the hardest part!
   

a. Practice what you will say.
b. Speak clearly
c. Maintain eye contact
d. Take your time when talking
e. Ask for time to think if you need it
f. Rephrase what you hear to be sure you understand
g. Be respectful
h. Be careful of your body language (do you look angry)
i. Use I statements (i.e. "I feel that" not "You have to")
j. Be flexible (you might have to compromise)


2. Ask For Change: What have you got to lose?
   

a. Start at the top. Always talk to someone in charge. This will keep you from having to explain your situation over and over again.
b. Make clear, specific requests with rationale for the requests
c. Don't make personal insults, accusations, or get into arguments - Remember you want to make positive change.
d. Put it in writing (always document your request - you never know when you might need documentation)
e. Encourage others to join your efforts


3. Follow-up: Make change happen.
   

   a. Always follow-up
   b. If action was taken send a Thank-you note
   c. If nothing has changed - contact the appropriate authorities (U.S. Department of Justice) - Remember there are laws in place to protect you!
   d. Make sure and document all contact with the agency or program you are trying to access.
   e. Keep trying!
   

This seems like a lot of work, but according to the National Recreation and Park Association (NRPA, 2002), "Over 50 million individuals with disabilities face physical and service barriers that tend to discourage personal and professional development, diminish involvement in community life, and often constrain personal recreation," they go on to say that, "Access to recreation sites and programs for individuals with disabilities contributes to self-confidence, functional ability, independence, and vocational skills." In light of this, it seems that if you do not advocate for your personal access to recreation activities and venues, you are doing yourself a disservice as you are missing out on not only the benefits previously mentioned by NRPA but fun opportunities to try new and exciting things that can enrich your life.

The remaining question is, are you ready to take charge of your leisure pursuits? If so, the following case studies are presented as a way to practice your advocacy skills…what will you do?

CASE STUDIES

1. Angie is a 19 year old female who loves hockey. Angie has Cerebral Palsy and utilizes a wheelchair to get around. Angie's friends have surprised her with tickets to the Mighty Ducks game tonight. Angie calls ahead to make sure she has an accessible seat and is assured that she does. When Angie and her friends arrive at the arena, Angie finds that the accessible seats are actually separated from her friends. On top of this, when the people in front of Angie stand up during exciting moments of the game, Angie's line of sight is broken and she can't see the floor.

   a. What would you do if you were Angie?
   b. What accommodations could she request?
   c. Was there any way to avoid this conflict?
   

2. Bill, age 28, has been playing tennis since he was eight-years old. Bill lost both of his legs in a car accident and utilizes a wheelchair to play and maneuver around in. Bill has traveled to his sister's house in another state for the holidays. Bill's brother-in-law challenges Bill to a match at the local country club. Upon arriving, the manager of the country club feels that Bill will be a distraction to the other players who are members of the club. Bill assures the manager that he is quite capable of playing and shouldn't be a distraction to anyone else. The manager decides to allow Bill to play for today only, after all one or two matches won't hurt. While playing, Bill and his brother-in-law learn about a doubles tournament to be held this weekend at the country club. Today is the last day to register and pay fees for the tournament. While Bill and his brother-in-law are attempting to register for the doubles tennis tournament, the manager comes over and says, "Under no circumstances, will Bill be allowed to play. After all, we can't change the rules for everyone so we can't change them just for you." Bill tries to explain a modification that he can use to play in a "normal" tennis game that does not penalize other players for playing with or against him and that gives him no advantage over other players and fits with normal tennis rules. The manager stands by his decision.

a. How do you handle this situation if you are Bill?
b. Is it worth your effort if you don't even live in the area?
c. What are Bill's rights in this instance?


3. Michelle and Antoine are on their honeymoon visiting a state park, where they decide they would like to participate in the interpretive hike, which shares important history about the park and surrounding area that they are visiting. Michelle is deaf and Antoine is hearing-impaired. Michelle and Antoine can communicate with each other, but do not understand the park staff person who is leading the hike.
   

   a. If you were Michelle or Antoine how would you handle this situation?
   b. What are your expectations of the service you should receive?
   

SELF-ADVOCACY RESOURCES

For more information on becoming a self-advocate or getting involved in the civil rights movement of the disability community a list of helpful agencies and documents to assist you in your journey follows. Good luck!

ACT Self-Advocacy Resource Network
(800) 641-0059 (voice)
www.selfadvocacy.org

Disability.gov
www.disabilityinfo.gov

Freedom Clearinghouse
www.freedomclearinghouse.org

Go for the Gold: Empowerment for Life
(501) 407-0709
www.qualitmall.org

Kids As Self Advocates
www.fvkasa.org

National Center on Accessibility
(812) 856-4422 (voice)
(812) 856-4421 (tty)
www.nrpa

National Park Service Disability Rights Coordinators
www.doi.gov/diversity/doc/5504cor.htm

People First of Washington
rtc.umn.edu/self/advocacy.html

Self-Advocates Becoming Empowered
www.sabeusa.org

Speaking for Ourselves
www.speaking.org

U.S. Department of Justice
Information on enforcement of the ADA and how to file a complaint under the ADA.
(800) 514-0301 (voice)
(800) 514-0383 (tty)
http://www.usdoj.gov/crt/ada/adahom1.htm

Links to Other Disability Resources
http://soeweb.syr.edu/thechp/disres.htm

Links to Resources on advocacy, self-advocacy and disability legislation/policy:
http://mtdh.ruralinstitute.umt.edu/Directory/advocacy.htm

About this Monograph

These materials were developed by the National Center on Accessibility for the National Center on Physical Activity and Disability under sponsorship of the Centers for Disease Control and Prevention.

About the Author

Amber Havens is a doctoral student at Indiana University specializing in leisure behavior. She received her undergraduate degree in therapeutic recreation from Arkansas Tech University and her graduate degree from Indiana University.

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