Category Archives: awareness

Supporting inclusive theatre

I’m not really a movie theater fan.  I don’t know if it is sensory or what, but there are just a bunch of other things I’d rather be doing than movies.  I’m definitely a fan of Netflix, though! 

I was lucky enough, however, to be exposed to the performing arts as a child and love almost nothing more than a live performance – concert, theater show, dance performance… just about anything live makes me happy.

The organization who runs the discount TKTS booth in Times Square, the Theatre Development Fund, also runs all kinds of amazing programs aimed at making theatre (both in NYC and across the country) accessible to all – including people with disabilities.  I’m lucky in that I do not need any accommodations to go to the theatre, but many people are not able to do so.  They offer discounted performances targeted to people with disabilities affecting vision or hearing, such as audio-described and signed performances.

TDF recently started something called the Autism Theatre Initiative, which offers modified performances targeted for families affected by autism.  I think this is an amazing idea that I hope will have more success, as theatre is a powerful art form that everyone should have access to – and that many people with autism cannot. As a part of the newly-launched GOOD site, they are in the running to receive funding to continue this program.  Currently the Lion King offers performances, personally I think it would be amazing if this expanded beyond Disney shows (many people with differences of all kinds have responded to the message of Wicked, for example, that would be great if they could adapt that show).  Please consider checking this out and voting!

Thanks for reading this.  I don’t really want to use my blog just to promote other things, but this is important to me on behalf of theatre fans with and without disabilities.

More music that inspires me…

If we go softly we might as well not make a sound
If we speak gently we’ll never break the crowd
If you keep hiding how will they know what you can do
I’m not risiding within these walls with you

Careful hearts might stay protected
But rebel hearts get resurrected

See I fire flames
Light up this town
Learn our every name
Or burn it down
Don’t go back to then
Don’t kill your voice
Stand like girls or men
But make some noise – Noise by Gavin Creel & Robbie Roth

So much of this song applies to life with Moebius and the importance of awareness and the sense of community we now have.  It’s important to “get loud” re: awareness in any way we can or feel comfortable.  We don’t need to shout from the rooftops or anything obnoxious like that but awareness in everyday life is important.  We can make a big difference if we think about it…

“Hope is the bravest most beautiful bird In the sky”

This is the story
Of a bird with no wings
But certain that it can fly
Sailing on love
Into the head winds
Forcing it’s way by and by

If only we were
As strong as this bird
Our spirit would never die

What do we name it
Hope is the right word
Hope is the bravest most beautiful bird
In the sky

Hope is a bird
Flies higher than others
And keeps all our dreams alive
Free of all doubt
Perfectly fearless
Fed by its will to survive

Imagine ourselves
Becoming this bird
We can when we dare to try
And see ourselves flying
Over the mountain
Hope is the bravest most beautiful bird
In the sky

Only hope can light the way
Only hope can heal the heart
Only hope can keep the clouds
From hiding the moon and the stars

If only we were
As strong as this bird
Our spirit would never die

What do we name it
Only one word
Hope is the bravest most beautiful bird
Hope is the bravest most beautiful bird
In the sky

Only hope can light the way
Only hope can heal the heart
Only hope can keep the clouds
From hiding the moon and the stars

This was a story
Of a bird without wings
And rose above everything
Never once giving up hope – Hope (2008), written by Paul Hampton, sung by Idina Menzel

Tonight I’m thinking about hopes… my own hopes, the hopes of people I see posting about Moebius Syndrome Awareness Day. In many ways, they are the same. In some ways, they are different. In some ways I feel battle-weary. I don’t feel a particular desire to shout from the rooftops tomorrow or anything. I don’t think that would help me very much.

But I love the expressions of hope that have been shown this week, hope for the future, hope for a better world for children and families. The idea that people don’t have to wait years or decades to meet someone who looks like them. So… I’m embracing the surge of hope I feel in the Moebius community right now. Hoping that will propel people to great things this year…

Awareness in the most unlikely of places

I love coffee.  A lot.  And spend a ridiculous amount of time at various Starbucks… so I was very excited when I saw this card supporting disability awareness month when I was waiting in line for my latte:

It’s nice that awareness of all kinds is being spread and advocated for by some of our most ubiquitous companies.  As much as nonprofits and individuals can do, getting it out into the general population is excellent.  And I got a card… so Starbuck’s marketing and philanthropic plan apparently worked for me!