COOL BY ASSOCIATION

Tami Leitz, Spokane County Parent to Parent Coordinator

When my daughter Claire was in elementary school, I pleaded with the staff countless times to stop denying her access to activities meant for the entire student body because she has Down Syndrome and autism. Eventually, I broke down crying and told the principal that I am not interested in hearing another person tell me about how much they “care about Claire” or how adorable she is.

Caring about Claire means very little to Claire when she is not included. True caring, that has a positive impact on another person, involves remembering them when it matters. Without action they have reduced someone to an idea, not a person, (they like the idea of caring about Clarie). When it’s time for the assembly, recess, field day, when you’re sending out flyers for after school activities… that’s when you show someone you care, by remembering them.  Kind words only go so far when you are segregated and discriminated against based on a disability. 

I want to teach my children to ask themselves, “Does this person’s words align with their actions?” to assess for themselves if a relationship is healthy.

Early on I noticed differences in the way some people interacted with Claire.  People who had invested very little into their relationship with her were suddenly using a selfie with her as their profile on social media, or posting about how much they cared about her when they had almost no real relationship with her. 

Virtue signaling happens when someone publicly expresses opinions intended to demonstrate one’s good character or moral correctness. They are expressing a moral viewpoint to communicate their good character. When you become its target, it feels disingenuous. There is no risk or sacrifice involved, it’s basically saying, “Look at me, I’m a good person.”

Picture yourself scrolling through Instagram and you come across an inspiring story of a high school basketball team who arranged with the opposing team to allow a student with a disability to participate in the final play of the final game. Is that inherently bad? Not necessarily, it all comes down to the kind of relationship the young athlete had with their team all season long. Were they included in practices and pictures? Did they go to the games throughout the year? Do they feel connected and a part of the team? If the answers to those questions are “yes,” awesome.  If the answer is “no” then the display was much more about making the players and spectators feel good about themselves for a moment, not a genuine connection or community building for the person with a disability.

I never could have guessed the thing what would spark Claire’s fascination. At nearly 18 years-old her special interest is wigs, and she is obsessed with them.  We watches YouTube videos of people trying on wigs, making wigs, selling wigs. She also has an impressive wig collection and wears one nearly every day. Equipped with this knowledge, the teachers who work with Claire decided to surprise her by wearing wigs to celebrate her birthday. At drop off they came out in a rainbow of color, assembled in a conga line, dancing to Claire’s favorite song, “Best of Both Worlds” by Miley Cyrus.  Claire fangirl screamed and jumped out of the car as if Hannah Montana herself came to her high school to wish her a happy birthday.  They split the group into two lines, each person took a turn dancing down the center towards Claire as she cheered them on shouting “It’s my birthday!”

Dancing along, I thought of the hard earned, genuine connection each staff member shares with Claire; all the inside jokes, signature dance moves, secret handshakes, and how those moments made this one that much more impactful. The celebration meant so much more because the people who arranged it had no other motive than to celebrate Claire and share in the joy of the surprise with her.

People with disabilities, and those who support them, are not some kind of super-human saint blessed with the patience of Job. I am an ordinary mom doing the best I can every day to love and support the people I care about just like any other parent.  We do not exist to inspire others or remind them not to take for granted their lives that are not yet affected by disability. 

At its core I believe a shift in thinking could eliminate people taking advantage of others in this way and end the harm that comes from seeking shallow relationships for one’s own gain. Stop pitying people with disabilities and their caregivers. Stop making us your heroes too. See us as a reflection of the normal human experience. In relationships with us, make the sacrifices needed to include us when it’s inconvenient and no one is watching. Stick around and enjoy a real relationship with someone as interesting, complex, and worthy of companionship as any other human being.

I’ll leave you with a quote from Brené Brown; “Integrity is choosing courage over comfort; choosing what is right over what is fun, fast or easy, and choosing to practice our values rather than simply professing them.”

OOPS!... THEY DID IT AGAIN

by Jennifer Oliveri, Advocacy and Family Support Director

For the record, I’m generally not a name-dropper. There are a few reasons for this, but first and foremost, it’s because I don’t actually know anyone famous (not for lack of trying, but that is a different story altogether). But there is one name that I drop, and it generally gets the response I am looking for. I’m sure you have heard of her… Brittney Spears.

The spotlight she put on conservatorship/guardianship cannot be overstated. For over a decade, Spears lived under a conservatorship that controlled various aspects of her life, from financial decisions to personal freedoms. This legal arrangement, while intended to protect individuals who are deemed unable to manage their own affairs, has raised significant concerns about the potential for abuse and the stripping away of civil liberties. However, Spears fought to get out of it, eventually did, and the world cheered her on.

Because of her, a harsh spotlight was cast on conservatorship/guardianship and how limiting it is to the people who live under it. Laws changed, with many states, including Washington, now requiring that less restrictive guardianship alternatives must be explored first before guardianship can be put into place. Unfortunately, while the world has heard of Spears, not everyone has heard of the change in law.

A few weeks ago, I received a call from a woman in a panic because her daughter, who has Spina Bifida, was scheduled to receive needed surgery at a local hospital but the surgery was called off.  Someone on the medical team said they didn’t truly believe she understood the process, and before they would proceed, a guardianship needed to be put in place.

We talked about options, including an official Supported Decision Making Agreement and Medical Power of Attorney, which still ensures her daughter’s rights, but can help with medical decisions.

I hung up the phone thankful she had called and frustrated at the hospital.  I chalked it up to a “one-off situation,” not believing a hospital would advocate for guardianship and stripping away a person’s rights just so they can receive needed medical care.

I was wrong.

Two weeks later I received a call from a father, saying his child with disabilities would not be getting surgery from the same hospital, until a guardianship was put in place.

I called the hospital, and after a few transfers, I reached someone where I shared what I was hearing. I explained how guardianship removes a person’s rights; it’s expensive, it’s difficult to revoke, and it invites the court into the lives of the family. We talked about alternatives and how hospitals can provide care without the confines of guardianship.

But that has been the narrative for so long, hasn’t it?  We have all heard it since our children were diagnosed; when they turn 18, guardianship is required. While there are some situations when guardianship is the best choice, it should not be considered an “automatic” when our children transition into adulthood.

However, now that Spears is free, many people have teamed up with disability rights advocates to raise awareness of people with disabilities who are under guardianships, arguing that stripping away all the rights of a person with disabilities simply because they need help with some aspects of their life is inherently ableist. The guardianship system, as it stands, often fails to respect the autonomy, will, and preferences of people with disabilities. 

Let’s work together to educate our community about alternatives to guardianship. If you want more information on ways to support your loved one with intellectual and developmental disabilities without the restrictions of guardianship, please reach out to The Arc of Spokane at advocacy@arc-spokane.org

EDUCATE! ADVOCATE! VOTE!

by Taylor Crisp, Parent Coalition Self-Advocate

It is that time again when kids are out of school for the summer, the weather starts getting warmer, you are able to go swimming, enjoy longer days, and feel the warm summer breeze upon your face.

But many people don’t realize that summertime is also a time we celebrate social justice and civil right movements in America!

In summer, we celebrate Pride by embracing the LBGTQIA+ communities and standing in solidarity with one another to support, and accept, one another no matter who someone loves. We honor Juneteenth, on June 19th, to commemorate the emancipation of enslaved African Americans in the United States. And starting July 1st we celebrate the start of Disability Pride Month.

Disability Pride Month is an opportunity to honor the history, achievements, experiences, and struggles of the disability community and celebrate the passing of The Americans with Disabilities Act, often referred to as the ADA.  This piece of federal legislation was signed on July 26th, 1990, only 34 years ago!

The ADA is a law that is supposed to prohibit discrimination against individuals with disabilities and ensure equal opportunities for people with disabilities to participate and receive services within their communities.

As I reflect on this law, and am thankful for its passing, I can’t help but think how much further we need to go. We have a law that has not reached true equality or equity yet. Individuals with disabilities have diverse levels of support, needs, dreams and desires for the present and the future. There are still barriers and obstacles those within the IDD community face on a daily basis, as well as the family and care providers that support them.

When will we come to a time when students can receive an inclusive education without the threat of being restrained and/or isolated? When can we ensure that healthcare is more accessible; with physicians being trained to work with people with IDD, and clinics and hospitals having accommodations so people can receive needed care?  When will waitlists for Home Community Based Services not be so long and people with IDD can finally say they live in their own home?  When will couples surviving paycheck to paycheck on SSI get married without losing their benefits?  When will an individual with a disability become a leader of our nation?

How can you contribute to ensuring equity and equality to people with IDD? Join me and learn about the work that still needs to be done and get out there and vote!  Who we vote for can greatly impact the quality of life and services individuals with disabilities need. If you or a loved one has a disability, encourage them to vote and let them know how much their voice matters!  You cannot celebrate Disability Pride without recognizing the policy change it took to get us here!

Happy Disability Pride Month everyone! Educate! Advocate! Vote!

ATTUNEMENT AS A HEALING TOOL

by Blaine Huizinga, Sexual Abuse Awareness and Response Trainer

Parenting is a challenging journey, and for those caring for children with IDD who have experienced trauma, the path requires even greater empathy and understanding. Attunement becomes a critical component in fostering healing and growth.

You may or may not have heard of attunement, but it is a skill that parents and providers use across neurotypical and neurodivergent spectrums. It means that caregivers provide caring, non-judgmental support that is rooted in understanding the person’s tendencies, emotional needs and responses, and typical reactions to situations. Being able to be “attuned’ to someone can assist them to self-regulate or co-regulate (with someone’s support) when dysregulation occurs, such as trauma triggers or other antecedents.

It is likely that folks with IDD have encountered trauma within their lifetime. When we can recognize their subtle cues, provide emotional or psychological safety, and validate their feelings, this can bolster their ability to be resilient (bounce-back from trauma). Emotional attunement fosters connection: for people to feel seen and understood, which is essential for their healing and recovery from traumatic experiences. It reassures them that they are not alone and that their feelings are important, contributing to a sense of safety and trust.

There can be difficulty in achieving attunement due to the complexity of trauma and IDD, especially for caregivers with factors such as needing to model and guide behavior while still allowing for non-judgmental supports as children navigate their emotions. People in roles that provide care are more susceptible to something sometimes referred to as "empathic strain” or the idea that, over time, people providing care can be disheartened by choices the person they care for makes that result in consequences. It’s important to recognize how folks in these carer roles may channel these emotions in ways that don’t place judgment on or negatively impact the person they provide care for, as this person’s need for support still remains.

Attunement is a powerful tool for parents to support their children with IDD through the aftermath of trauma. It builds a foundation of emotional security, allowing children to heal and thrive despite the challenges they face.

If you would like more information about healing options and support, or just general information regarding the topic, please feel free to reach out to The Arc of Spokane.

Learn More About Parent to Parent Resources

Parents may have questions and concerns as they learn about services that can help their child and family and often need time and support to navigate their own emotions and adjust to raising a child with special needs.

Personal support from fellow parent can help with:

• Emotional support for parents
• Information and referrals to community resources
• Connecting you to Trained Helping Parents
• Social and recreational events
• Current information on disabilities, medical conditions and community resources
• Training for parents who would like to become Volunteer Helping Parents
• Public awareness and outreach to the community regarding individuals with disabilities

Learn more about Parent to Parent resources here.

Find local resources for the help you need!

Did you know The Arc of Spokane has a digital resource guide? Click here for information on a variety of different resources!

If you want a more comprehensive and personalized list of resources for your specific situation, please contact our Individual Advocacy Team at advocacy@arc-spokane.org or call (509) 789-8327. They will help you untangle complex issues and the service is free. The Individual Advocacy team is ready to help!

Contact Us

Contact the Advocacy and Family Support Team by emailing us at advocacy@arc-spokane.org.

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