Planning, Purpose & Pride

Last week, I saw this message posted on a listserv I belong to:

Hi, I’m 66, need help with all tasks of daily living, and use aac software to help me communicate. Does anyone know of an assistive living facility that accepts a person who needs as much help as I do but has a good mind? Also, I would like to be around people who are both disabled and able-bodied.

I’m not sure what bothered me most about this, but here are a few red flags that moved me to write about it here:

• 66 doesn’t seem old enough for assistive living;

• Needing physical support AND having a “good mind” shouldn’t make care more complicated to find;

• Searching for this type of help online must feel scary and desperate. Can’t we do better?

I’m thinking about all the young people I know who are in their twenties. And I’m hoping that a few decades from now, none of them is in a position like the one described above. As parents and people who care about their lives, we must do a good job of helping them maximize their potential now, develop for the future, and plan for whatever “old age” entails. Our families deserve this, and so do we.

As every parent of adult children knows, kids grow up fast. This means we grow old, too, and planning for when we’re not around is something we simply must not avoid, no matter how scary it seems. Check out this wonderful website to get started.

As always, thanks for being here.

  

Road to success. 

I was recently introduced to a planning framework that identifies seven key domains required for a happy, healthy life. These are so important for us to remember as we navigate our journey as parents of individuals with disabilities. To me, striving to achieve them ourselves and helping our loved ones do the same equals a life well lived:

• Identity (being well-known; having personhood; individuality; have a history)

• Growth (development; enrichment, expanding; evolving)

• Autonomy (liberty; self-determination; choice; freedom)

• Security (freedom from doubt, anxiety, or fear; safety; privacy; dignity; respect)

• Connectedness (belonging; engaged; involvement; connected to time, place, and nature)

• Meaning (significance; heart; hope, value; purpose; sacredness)

• Joy (happiness; pleasure; delight; contentment; enjoyment)

 

Disability pride.

At the recommendation of my sister, I just finished a powerful book called The Extraordinary Life of Sam Hell. It was a quick and enjoyable page-turner that left me pondering many of life’s big questions. It also demonstrated how important it is for us to love ourselves and embrace our differences, even if this takes a long time to achieve.

In honor of Disability Pride Month (July), here are a few points of clarity from Easter Seals:

• Disability is a source of strength and creativity. It can foster resourcefulness and ingenuity and is a strong catalyst for growth in society;

• Disability pride means something different for everyone, but it shares one important characteristic: Disabled people have the right to love, accept and advocate for their whole selves. 

• Self-advocacy is never alone. Though “self-advocacy” means advocating for one’s own rights, there’s always a community right behind you – especially in the disability community, where ​​there are countless advocates supporting transformations in policy and society.

Check out this podcast for more interesting and entertaining perspective about disability from people with disabilities. So many great episodes.

What are you reading or listening to these days?

Leave a comment

Today’s history lesson.

As the mom of someone with disabilities, I have long felt pressure to know all about the ADA. So I decided awhile ago to learn a few basic facts that actually help me be a better parent and advocate. Here are a few, in honor of the ADA 33rd “birthday” this week:

1. The Americans with Disabilities Act was signed into law by President George W. Bush on July 26, 2023. Amended in 2008, the law helps protect people with disabilities against discrimination in the workplace, school and other settings. Here’s a very user-friendly link with helpful info about what these laws do and why they’re so important to people with and without disabilities.

2. The ADA is divided into five titles (or sections) that relate to different areas of public life: public accommodations, employment, transportation, state and local government services, and telecommunications.

3. Even after more than three decades, many elected officials and people in authority don’t understand that disability rights are civil rights. So it’s often up to individuals and their families to help ensure the ADA is enforced at a local level. Learn more here about what to do if you have a complaint or question about the ADA where you live.

 

Every person in our nation has a fundamental right to participate fully in our society and to determine their own future, the right to self-determination, the right to dignity.

— U.S. Vice President Kamala Harris

Straight talk. 

My in-box exploded this week with messages from people sharing this recent article on autism. The subhead says it all: “Rates of autism are skyrocketing. The question isn’t just why—but what we need to do about it right now, and what’s holding us back.”

Rather than simply celebrating neurodiversity, as society is increasingly moving to do, author Jill Escher, the mother of two young adults with profound autism, explains why it’s vital to continue researching what causes autism and developing services to support autistic individuals and their families. Her honest and gut-wrenching piece is a wake-up call to people everywhere.

“We desperately need innovative solutions. But we cannot make progress if we continue normalizing patent disability, burying common sense and moral duty under a pile of fairy tales.”

Please share your thoughts below.

Now hiring.

The Superhero Project is looking to hire someone to help with social media. This super inclusive non-profit empowers youth impacted by illness, disability, trauma and complex mental health or medical needs. If you or someone you know is interested in this part-time position, send an email to [email protected] — along with a cover letter, resume, and 2-3 samples of Canva (or similar program) design work.

Another Normal is a free e-newsletter for parents, caregivers and others committed to helping young adults with disabilities bloom and grow.  If this copy was forwarded to you, please sign-up for your own copy below. Welcome to our community.