Advocacy Through Art

 

Art can be used as a tool for advocacy by bringing attention to important social justice issues through various media such as film, theatre, photography, books, paintings, and others. This helps to paint vivid pictures of the conditions in which people live and work, and their struggle to find solutions. The arts have a unique ability to raise awareness, build support for social justice, and emotionally engage people. Additionally, the arts are participatory, allowing affected communities to directly advocate for themselves. By using art as a tool for advocacy, we can create a lasting impact and bring attention to the issues that matter most. 

 

This can be seen by some testimony and song used by disability activist Elaine Kolb in 2014 when she was in opposition to regulations pertaining to customized wheelchairs. This testimony and use of song was effective in raising the concerns related to the bill and how it may affect individuals with disabilities. See Testimony and song lyrics below.

 

Customized Wheelchairs Regulations

Regulation Number 13-01/BF-Customized Wheelchairs

Independent mobility is part of what makes us human beings. Once we get past the infant & toddler stages, we move with more & more freedom. Of course, some of us have or acquire disabilities limiting our mobility. If you live long enough, things happen.

Proposed Customized Wheelchair Regulations are horrifying to those of us who have spent the past 20 or 30 or more years trying to advance civil & human rights for persons with disabilities. I am astounded that we have to devote our time & energy to fight for the same basic principles we thought we had established many years ago.

Independent mobility. What a concept! Who thought it was OK to remove language about requiring assessment to determine options for independent functioning, possibly using customized wheelchairs, which may or may not be motorized. Independent functioning, to whatever degree is possible, is our moral, as well as legal right.

What "expert" decided that clinicians and suppliers are NOT supposed to discuss the many, complex options concerning specific equipment & available features most suitable for individuals who may have multiple disabilities. That point made me very angry. Any reasonable person should understand that such consultation is absolutely essential, if the equipment provided will actually be useful and appropriate for an individual.

Over 45 years ago, I was stabbed in the back, resulting in a spinal cord injury. Since then, I have been involved with the Disability Rights Movement. The Americans with Disabilities Act, the Olmstead Act, Money Follows the Person and other legal efforts have established that independent functioning is essential to assure life, liberty, and the pursuit of happiness.

Bring your language in these regulations up to standards already recognized as fair and reasonable practices. Simplify procedures to improve efficiency.

Do NOT put these regulations out as they are. Make the changes we are requesting. Give us another chance to review your improvements.

Way back in 1981, I was in Australia on a Fulbright Scholarship, as part of the United Nations International Year of Disabled Persons (IYDP).  My focus was to study community-based services for people with disabilities and our families. One day, I was visiting an institution on the exact day when a man in his 30's received his very first motorized wheelchair. He was born with cerebral palsy. He never walked. He was never able to push a manual wheelchair, although he sat in one most of his life.

Pure joy!!! The first independent mobility of his life. He was thrilled. I went outside and shed a few tears. Wonderful that it was happening. Horrible because he had been denied the right to a power wheelchair, because he lived in an institution, until they changed that rule.

We have tasted freedom and we won't turn back!!!

WE WILL RIDE!!!
Elaine M. Kolb

 

 

WE WILL RIDE!!! March 27, 1987

by Elaine M. Kolb 6:30am-8:10am

 

1.) Far too many people,

Have been suffering too long,

We won't accept excuses,

Right is right and wrong is wrong,

And it's wrong to try to keep us,

Waiting for some charity,

So, let's get ourselves together,

Here and now---you and me.

 

CHORUS:

We will ride---we will ride,

With the strength of truth,

And justice on our side,

By the grace of God above,

Our battle cry is love,

And we will ride---we will ride!!!

 

2.) Some of us are inconvenienced,

By some disability,

Still, we count ourselves as citizens,

And we're aiming to be free,

Riding public transportation,

As one way to get around,

Backed by federal regulations,

Hear us now---we're freedom-bound.

 

CHORUS:

 

3.) By the thousands and the millions,

We lift our voice to say,

That it's time to practice what we preach,

And live it, day by day,

Every kind of people share,

The power to be free,

We will live & learn & work & move,

And love (and VOTE!!!) with dignity.

 

CHORUS:

 

RE: Customized Wheelchairs Regulations

        New verses written March 15, 2014

 

4.)  The folks who write the policies,

That help keep us alive,

Don't understand that how we live,

Depends on what we drive,

Without some independence,

It's awful hard to cope,

You take away mobility,

You take a way our Hope.

 

CHORUS:

 

5.)  We know our Custom Wheelchairs,

Have to fit just right,

We know this from experience,

That's why we're here to fight,

These foolish regulations,

From an awful, ugly past,

We will keep on rolling,

Until we're FREE AT LAST!!!

 

This is also seen in her call to legislators to increase funding for hospice and palliative care as well as community services and used in her opposition to aide in dying bills. 

 

NOT DEAD YET!!!
by Elaine Marie Kolb
October 5, 1996 (verses 2&3, 2013)

CHORUS:
We are NOT DEAD YET -- We can Boogie with the Best of them,
We are NOT DEAD YET -- We can Laugh & have some Fun,
No, we're NOT DEAD YET -- We're Fighting for our Freedom,
And We'll Never Die -- 'Cause our Spirit will Live On!!!

1) Now, the outcasts of the out castes, Become the leaders of today,
& the ones we used to throw away to die, Are teaching us a better way,
I'm positive, if you're HIV, You can understand this song,
The last will be first, the first will be last, & there's more than one way to be strong.

2) When you take away our services, We don't know how we'll survive,
Since death is cost-effective, Do you want us dead or alive?
When you take away the things we need, We don't know how we will cope,
When you cut our means of security, You take away our HOPE!

3) If Medicaid does not aid us, If Medicare does not care,
Millions of us will suffer, How can you believe that's fair?
If you want to cut back funding, Stop the welfare for the rich,
Billions bail out the billionaires, While we're trapped down in the ditch.

4) It's a battle cry for Freedom, Through the healing power of Love,
It's the Hope we share from our Visions, Deep inside, & Up Above,
It's the Peace that comes from the Struggle, To be as Brave as we can be,
We are Proud, & we are Humble, & the Truth will Set us Free!!!

Elaine M. Kolb
1187 Campbell Ave. #106
West Haven, CT  06516
(203) 933-9188
elaine.kolb@comcast.net

 

Note: my sister Norma, mentioned in this, went onto hospice care

& died peacefully on April 23, 2014