The Ugly Truth

Image

Last week our local news station decided to make a political statement on the back of our local Special Olympics program. As the parents of two children with special needs, this story rattled us.  For years, we have been trying to navigate the services our community offers for our children with special needs and have been overwhelmingly disappointed in the lack of municipal support we have found for people living with disabilities.  So when the Special Olympics became the target of a political discussion as to whether city tax dollars should be used to fund private non-profits, we decided it was time to take a stand. 

We have listened to both sides of the argument and want to be part of a solution — after all, the Special Olympics is a huge part of our lives. 

As we began investigating the situation, we learned that New Hanover County has the largest population of people living with a disability in our state.  With an estimated 1 in 5 people living with a disability, we began questioning why our city doesn’t do more to support this population.  With an $88 million dollar general fund city budget, we estimated that less than $90,000 is allocated annually to our city’s special needs community.  Based on those figures, our city is spending a little over $5 a year on each of its community members with special needs. In sharp contrast, our city is spending 200 times that on services for its typically developing population. 

The argument that city tax dollars should not be used to support Special Olympics and their fund raising efforts has been made on the grounds that the city does not do this for other private non-profits.  I ask you this . . . without the Special Olympics what city-supported programs remain that specifically serve individuals with disabilities? 

The answer is next to nothing. 

People with disabilities face all kinds of obstacles including securing housing, finding employment, learning life skills and continuing education.  Sadly, our city does not provide any financial support for any of these needs.  Meanwhile, our city does fund programs that help the other 4/5ths of its citizenry do these very same things.

The fact that the Special Olympics solicits and receives private donations enables them to provide valuable services to our community – services that the city does not otherwise provide.  100% of the money that is raised through their fund raising efforts goes directly back into New Hanover County Special Olympics, which serves our city’s special needs population.

If were going to have an argument about whether our city tax dollars should support non-profits, then let’s have it.  Let’s talk about whether our city council should have the ability to allocate funds to private organizations (or if the city should create their own version of the Special Olympics and find the budget to make it happen) but let’s not do it on the back of the Special Olympics. 

Without the Special Olympics, I’m afraid our city would be doing little to nothing to serve 1 out of every 5 of its citizens and that’s not acceptable. 

Advertisements

Fairy Godmother . . . I need your help! Disney Disability Access Service Card

Image

Fairy Godmother . . . I need your help!

By now, I’m sure you’re aware of the issue our family is taking with Disney regarding their new policy on people with disabilities and I’m afraid after a conversation that I had two days ago with a representative speaking on behalf of Meg Crofton, President Walt Disney Parks and Resorts Operations, a remedy to this situation might just require a wave of your magic wand.

You probably remember us quite well Fairy Godmother, but just in case I thought I’d jog your memory.  We’re that family of six that received the rare blessing of two children with Down syndrome — the ones that look forward to visiting your kingdom more than any other place on earth.  We’re also the family that requires special accommodations in order to make our experience there accessible and enjoyable. The family that needs preferential seating at shows because our son was born with bilateral cataracts and still struggles to see.  The ones who need to wait until the last minute to unload from our strollers before boarding a ride, because our children are prone to run away.  We’re the family whose children want to try new rides and attractions, but are often scared of the unknown or unexpected and can have melt downs at any given moment.   We’re the ones that struggle in crowds and have a hard time understanding the idea of waiting in a line for even a few minutes.  Surely, you remember that we’re the family that has a hard time sticking to a schedule and needs lots of flexibility because our children’s needs are ever changing.  And if all of that doesn’t ring a bell, then maybe you remember how we’re the family that lights up like Christmas morning when given the chance to interact with you and your friends in a place so magical that we’re able to escape our daily struggles and just enjoy being with our precious children.

Perhaps you’re having a hard time distinguishing our family from the millions of others families that could describe themselves the exact same way.  Many of them have been following this situation and together we’re all hoping for a resolution that will allow our families to continue visiting you with the same accommodations you extended to us before this new policy went into effect.

Sadly, after the 45-minute conversation I had two days ago with April, Ms. Crofton’s representative, I’m losing hope.  Above everything else April said, the thing that saddened me the most was her mention of “a paradigm shift” that is taking place at Disney.  She said Disney is currently focused on making “better guest flow for all of their guests” and that the new Disability Access Service card will be a “better way to accomplish this”.

After I picked my jaw up off the ground, I asked April if Ms. Crofton or one of her colleagues would like to join our family for a day at Disney to see how that new “paradigm shift” is working out for their guests — to get to know a family like ours and watch us as we spend the day struggling to manage expectations.  I’m still waiting for a response.

I know you’re a very busy lady, Fairy Godmother, and there are certainly people out there that need your attention more than I do, but I believe granting this wish would send an important message to people everywhere that Disney gets families with special needs and values their presence in their parks.

Or perhaps Disney feels the price of being so accommodating to families with special needs is not worth the cost of combating the negative publicity surrounding it.  Now that’s a paradigm shift I thought Disney would never make.

Wishing upon a star,

Amy Wright

http://www.ItStartsWithAVoice.com

Dear Dumbo . . . it’s about your friend Mickey . . . Disney Disability Access Service Card

Image

Dear Dumbo,

A few days ago, I wrote a letter to your friend, Mickey Mouse. The reason for my letter was simple…as the mother of two children with Down syndrome I felt disappointed and upset that Disney was changing their policy regarding guests with disabilities.  What has unfolded since my letter was received and read has left me feeling even more disappointed and upset.  Before I go into too much detail, let me reiterate what I shared with Mr. Mouse in my initial correspondence . . . For years, we have been bringing our family to your home because above all other places in the world, Disney was the one place that made our entire experience not only accessible but enjoyable. As parents of children with special needs we seek these experiences because most of the time most of the world is just not built for us.  It was our impression that Disney recognized that the needs of people with intellectual and developmental disabilities — and their families — is far greater and more complex than typically developing people and that you and your friends worked hard to create a climate of accommodation and respect unlike any other organization in the world.

Sadly, it was through a telephone conversation that I had with a representative named Justin in Disability Services that I learned that my long-standing perceptions of Disney were about to be turned upside down.  Over the course of a thirty minute call, I came to the realization that the one place on earth I thought had been going above and beyond for families like ours was, in reality, just working toward trying to find a way to level the playing field for all of it’s visitors. Justin explained, “The intention of the Guest Assistance Card was never to give people with disabilities a shortened wait time for attractions, but rather an alternate entrance”.   He went on to say that “Disney expects all of it’s guests to wait their turn” and that the new Disability Access Service Card would serve this purpose much better than the former GAC.

The idea that a level playing field must be created for all guests absolutely took my breath away.  For those of us that know and love someone with an intellectual or developmental disability, we are acutely aware that the playing field will never be level.  I respectfully submit that in order to achieve this kind of “equality”, someone without an intellectual or developmental disability might have to experience a stroke or have an accident that would level their mental functioning to that of our children.  Unfortunately, I think there are people that don’t appreciate, let alone understand, the challenges people living with intellectual and developmental disabilities and their families face on a daily basis. What really disappoints me is that I thought Disney did.  I thought Disney created the Guest Assistance Card so that people with intellectual and developmental disabilities and their families could experience the magic of Disney without facing and overcoming the same obstacles they face every other day of their lives.

I’m sure you’re wondering why I’m reaching out to you today, Dumbo, but I have a feeling you know a little something about how it feels to be looked at and treated differently.  And just like your mother fought for your acceptance and inclusion, I’m determined to continue to be a voice for my children and the millions of others that live with intellectual and developmental disabilities.

Very truly yours,

Amy Wright

http://www.ItStartsWithAVoice.com

My Open Letter to Mickey Mouse – Disney Disability Access Service Card

Image

Our trip to Disney World  in 2006 . . long before Bitty was born.

Dear Mickey Mouse,

I’m writing to you today as I cuddle on the couch with my two youngest children, Beau and Bitty, while watching you and your friends entertain us at your “Clubhouse”.  Your show is a staple around here, probably because it reminds us of our favorite place on earth – your home, Disney World.  We’ve been visiting you there for over a decade now and every time we go, we leave wanting more.  Which is pretty uncommon in our family because most of the time when we go somewhere, it’s challenging to say the least.   Challenging, because these two sweet children curled up on the couch next to me, both have Down syndrome.  And while we face challenges on a daily basis, we feel extraordinarily blessed.

I’m reaching out to you today because I understand you’ve decided to make some policy changes that will directly affect not only Beau and Bitty’s experience at Disney World, but also the estimated 4.6 million people in our country that are living with an intellectual or developmental disability.  I know you have a special place in your heart for all of these special people, because for as long as I can remember, you have gone above and beyond to make your home not only accessible but enjoyable for everyone.  This is a model that I wish every organization in the world would try to emulate.  As parents of children with special needs we seek these kinds of experiences for our children, their siblings and our entire family.  We seek them, because most of the time, most of the world is just not built for our children.  No matter what obstacles our loved ones face, we as family members, are constantly working to meet their needs, helping them navigate circumstances and advocating for their acceptance and inclusion.  I want to commend you, because for years, you made all of this so easy.  You recognized that their needs are far greater and more complex than typically developing people and you created a climate of respect that made our visits to your Kingdom glorious.

While everyone’s needs vary, there is a common thread that connects people living with intellectual and developmental disabilities.  They are all remarkable human beings that work hard every day to overcome obstacles and misconceptions.  I can’t speak for the millions of others that will be affected by your policy change, but I can tell you that the obstacles this new policy presents will most likely prohibit Beau and Bitty from being able to visit you any day soon.   Without going into extensive details, I can tell you that waiting in any sort of a line is not within their capabilities at this stage in their lives and the concept of approaching a ride only to obtain a pass to come back at a later time, would be very confusing and upsetting to them.

I know there are people out there that have taken advantage of your policies in the past, which has prompted you to make these changes.  I can honestly say that I feel sorry for them.  I believe that if they spent one day walking in Beau or Bitty’s shoes, they would realize that the accommodations you offered for people living with disabilities was more than a courtesy, it was a necessity.

I have always believed that change starts with one voice.  I’m sure you’re aware that there is a chorus of voices imploring you to please reconsider this policy change.

For all of us that love someone with a disability and long to share the magic of Disney with them, please make this one wish come true.

Very truly yours,

Amy Wright

http://www.ItStartsWithAVoice.com