COMMUNITY STORIES

7 Colin Farrell Quotes Parents of a Child With a Disability Should Hear

By Jodi Murphy

I write about Disability

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May 2, 2017

Colin Farrell is one of my favorite on screen actors. I’ll never forget his character portrayals in “In Bruges” and “Saving Mr. Banks.” I didn’t realize his real life role as “dad” would be even more unforgettable.

I was lucky to see him in person as the featured guest at Gatepath’s 2017 Power of Possibilities event. From early intervention to job training for adults and seniors, Gatepath is a role model for “turning disabilities into possibilities.” Every year they bring the community together for an evening that shines a light on how our differences are what make us beautiful. We must work together to help those with differences flourish.

Colin shared his personal story of what it means to raise a child who is living and thriving with a developmental disability. His son, James, was diagnosed with Angelman syndrome (AS). AS is a rare genetic disorder that occurs in 1 in 15,000 children. It’s often misdiagnosed as cerebral palsy or autism.

I sat in awe of this charming, witty, Hollywood star who at heart is just a dad who wants both of his sons to experience life to their fullest potentials. Here are seven of my favorite Colin quotes and the messages I took from them:

“When I heard that word ‘cure’ at first I was kind of insulted, almost irate, as though they were judging my son, that he wasn’t he wasn’t exactly right, but he is exactly the way he’s supposed to be. He’s a magic, magic boy.”

Don’t let others’ judgment take away your child’s magic.

“He works so hard and milestones will be achieved throughout his life. When you’re told your child will ‘never’ do something and they do…now that’s an unbelievable experience. When my son walked at 4, it was a result of his hard work and drive. He has a desire to experience life, just like us, to touch it, to feel it, to sense it, to communicate it to others.”

Never let anyone say “never” when it comes to your child’s abilities.

“Be careful of judging what your child is capable of. You have to watch your child and give him every opportunity to see how they respond. Let your child decide what his limitations are.”

Never let yourself judge what your child is capable of achieving.

“He may not be able to verbally communicate, but this kid has it all going on… he thinks, he feels, he knows exactly what’s happening, and he’s got a voice. And that voice is inside of him and I have to find some way that will allow him to let it out.”

Don’t doubt that your child has a voice… It’s up to you to hear it.

“By virtue of his honesty, struggle, persistence and his personality, James brings out the best in people. He literally saved my life. I was on a destructive path. When I couldn’t make the changes in my life for myself, I made them for James. He gave me the reason to be a better man and father.”

Your child will bring out the best in you.

“James wants the same things we all do. He just wants to be part of the community. He wants to feel welcome and involved. He wants to give and feel love. He wants to play his part. He wants to contribute and add not only to his life, but the lives of others.”

Your child will make a difference if only given a chance to contribute.

“When those with special needs are rightfully given the same opportunities as the rest of us,
then the impossible becomes possible and each individual’s endeavor takes center stage. We then see ability instead of disability in every single person and we arrive at the solidarity of acceptance, respect and inclusion.”

Anything is possible when we open the doors of opportunity for all.

At the very end of the conversation, Colin made it clear that it’s time for Hollywood to get on the inclusion bandwagon and give more consideration to those with disabilities. He had the same message for the business world, saying “It’s not charity, but a smart business move.” I couldn’t agree more!

Please join Colin Ferrell, Gatepath and Geek Club Books in our commitment to create an inclusive world of acceptance, respect and compassion. Sign the “Pledge for Inclusion” today and let your voice be heard!

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The Family the Family and Medical Leave Act Leaves Out

By Carla Charter

I write about Disability

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May 2, 2017

No man is an island unto themselves entire of itself; every man is a piece of the continent, a part of the main. —John Donne

To me, never was the above statement more true than when it is applied to a family with disabilities. I am a disabled parent with a rare genetic condition. This same condition has been passed down to my children. Thus our family has become a complicated spider web of cared for and caretaker, roles which can all shift with the slightest whims of our syndrome.

In our family there are no one person’s issues. While one person may be having more symptoms at the moment, those issues or an entirely different set of never-before-dealt-with symptoms can pop up for another family member the very next day. Whoever is dealing with issues, whether old or new, there is one thing we can all be sure of. Whatever is affecting one person will reverberate throughout our family’s tangled genetic web.

Whether it’s a need for transportation because I can’t drive, rescheduling an appointment because someone’s needs are more pressing, or someone having to pick up a prescription on their way to work, our genes have inevitably tied us together. This disability boat we all float in together through life encompasses and weaves its way through every family member’s life, making our bond tighter and more stressful all at varying times.

Take a recent episode at our house. I received a call that my child who was at his school an hour away had a case of suspected pink eye. With my husband unable to leave work, my other child at home and I not able to drive, the duty of picking up the child at school fell to my daughter, who had to leave work two hours away. Thus a simple case of pink eye sent reverberations throughout our disability spider web, affecting everyone.

Many of our current laws have yet to reflect and support this self-made web we have created which allows each of us to live our separate lives collectively. The Family and Medical Leave Act is the perfect example. The civilian version of the bill allows a caregiver guaranteed unpaid time off to care for a parent, child or spouse without the worry of losing their job as a result. The military version of this bill, however, has added four magical words that make all the difference to a family like mine — “or next of kin.”

That may not seem like such a big difference at first — until you consider factors such the large number of children on the autism spectrum who will soon become adults. Autism is a spectrum; I know as I have children all over that spectrum. Some of these adults will be able to live independently, while others may need supports. For this last group, government services and funding are often limited as they may not fit neatly into any disability category. Many remain living at home with their parents while their siblings build lives in the larger world.

As society discusses the concerns about this growing group of adults, there is a caregiver aspect to this planning it seems no one has begun to address yet — sibling caregivers. Eventually the parents are going to pass away. When that happens, the autistic adult who needs supports may still face a severe lack of services and funding. Hopefully they will have a sibling to step in and help out.

However, without those four magic words, “or next of kin,” a sibling caregiver is not given the most basic of guarantees. If the sibling is lucky, as in my daughter’s situation, the employer is understanding. But there is no legal job protection if they need time off to meet their caregiving responsibilities. Let’s also not forgot those nieces, nephews, half- and step- siblings, as well as a myriad of other family members who step up when no one else can. These four words would give them protections as well.

I have a petition at change.org to add “or next of kin” to the Family and Medical Leave Act, so our families and thousands of others like them will be able to access the caregiving supports they have developed. Caregivers deserve to be able to balance their family and work responsibilities, knowing that any time someone they love might need to do the same for them.

Please sign my Family and Medical Leave Act Petition.

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Why Repealing the ACA Would Make America Sick Again

By Barbara Saunders

I write about Disability

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May 1, 2017

My son has Angelman syndrome. It’s a name attached to a lot of additional diagnoses. He also has moderate intellectual disability, severe speech/language disorder, epilepsy, ADHD, insomnia, and allergies. He takes two medications for seizures, four different medications for behavior and ADHD, four different medications for sleep, one medication for allergies, one multivitamin plus a B6 supplement. He’s had one abdominal surgery (for reflux and to put a G-tube in), two hernia repairs, and eye muscle surgery.

He communicates using an augmentative communication device as well as with a few words and signs. He wears orthotics and has a wheelchair/stroller for longer distances. He receives speech therapy and until this school year also received occupational therapy. Will sees a general pediatrician, a neurologist, a developmental-behavioral pediatrician, and an ophthalmologist. He used to see a GI specialist and neurosurgeon as well. The last thing I need to worry about is health insurance that enables him to get all of this care without bankrupting my family.

I understand that insurance companies may consider my son’s complex medical needs to be an expensive nightmare. The Affordable Care Act (ACA) gives me and my family peace of mind that he will have insurance and access to the health care he needs. Without provisions in the ACA such as no penalty or denial for pre-existing conditions and no lifetime caps on coverage/costs, my son would not be where he is today.

The medical care, medications, medical equipment/technology, and therapy services my son is afforded by having good insurance coverage are the reasons he is defying the odds. Children with Angelman syndrome often don’t talk at all. He says about 40 words. Children with Angelman syndrome often have seizures that are almost, if not completely, impossible to control. His seizures are very well-controlled, so well-controlled in fact that we’ve just finished weaning one of his three seizure medications. Children with Angelman syndrome have severe sleep problems, and some never sleep through the night. My son sleeps through the night almost every single night; without medications he’s up all night and all day.

I am a developmental-behavioral pediatrician and care for children with developmental disabilities and special health care needs. I hear stories that are similar, if not more powerful than my own, from the families of the children I treat. Good insurance enables children of all abilities to lead healthy lives and families to be “normal.”

I believe if our lawmakers repeal the ACA without a viable replacement plan, children like my son will suffer. It would be a completely irresponsible and tragic mistake that would affect the lives of millions of people across our country. Currently, 95 percent of all American children are insured, and this is due in large part to the ACA. If we truly want to “make America great again,” we must think of its future. Children are its future. My son and my patients are the future of this country. And if we don’t allow them to grow up to be healthy adults who can maximize their potential, America will not be great. It will be sick and weak.

I understand that some people view health insurance in the same light with which they view homeowner and automobile insurance. Health insurance is seen as protection from a devastating and unexpected health problem or event. That may be true for persons who have no pre-existing conditions. For those who do have a pre-existing condition, however, insurance is the gateway to health care and the means of being healthy. Without health insurance, even the simplest of medical conditions can progress to severe and even life-threatening stages. There are often serious, negative financial implications for those without health insurance when — not if — they experience a health crisis. Out-of-pocket medical expenses can lead to financial stress on individuals and families, and at times can even lead to bankruptcy and financial ruin.

There’s more: illness and poor health status often leads to a loss of productivity in the workplace. There are many individuals who have chronic medical conditions and are fully capable of getting an education, acquiring and maintaining a good job, and being productive citizens in their communities. If health insurance is taken away from these individuals, the communities in which they live would be adversely affected.

I believe the high risk/high cost groups being proposed are not the answer. When these Americans are put into a separate risk group, this actually leads to increased, rather than decreased, cost to all Americans. Funding high-risk plans that would provide an equivalent level of coverage to what my son has at the present time actually costs more than it does today. This is why high-risk pools have been unsuccessful when tried in the past and aren’t a realistic or feasible answer for today’s health insurance dilemma.

My child matters. Every child matters. Children are the future of our county, and every single one of them matters – including children with developmental disabilities and special health care needs. As a mother, and a doctor, I am watching what happens in Washington, D.C. and in Mississippi for my child and my patients.

There are faces behind the insurance cards that so many in our nation seem to want to revoke. These faces have names, and families, and stories, and dreams. Without said insurance cards, these children are much less likely to reach their dreams, and some may not even reach adulthood. To put it simply, without insurance, it is difficult at best – impossible at worst – to maintain one’s optimal health status. When health declines, children are more likely to be hospitalized, and as we all know, hospitalization is extremely expensive. I thought repealing the ACA was supposed to save us all money…

Do not simply repeal the ACA because another administration put it in place. Consider those constituents who are the very reason you are in this position of power, and make the ACA bigger and better than it is right now. Or come up with a better viable plan to keep the children of our country insured. But do not treat my child or anyone else’s like they don’t matter, or like they are a problem you’ll get around to solving later — because if you do, it may be too late.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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My Child’s Disability Is Not a Disadvantage, It's Just Different

By Christina Cipriano

I write about Disability

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May 1, 2017

My child’s disability is not a disadvantage:

It challenges me to be a better parent– the parent I didn’t know I could be and didn’t know how to be, but I am better because of it.

It keeps me patient, kind and humble.

It has taught me how to ask for help and how to receive it.

It compels me to prioritize what’s really important.

It has shown me I can handle more than I ever could have imagined possible.

It keeps me organized, attentive, young at heart and wise in mind.

It motivates me to earn more, do more, teach more, advocate more for my child and for others.

It grounds me.

It keeps me honest, practical, reasonable and logical.

It taught me how to give a compliment, how to see joy, how to feel frustration and how to kiss a boo-boo you can’t see but know is there.

It taught me about friends. The real friends who we already knew and opportunities for new friendships to develop.

It helps me recognize the beauty in the ordinary world around us as truly exceptional.

It compels me to make it count. Always.

It challenges me to be creative, to be prepared, to think under stress, function in anger and confront denial.

It broke down walls and built bridges with healthy boundaries for my family.

It continues to teach me how to see the best in those around me.

It keeps me going.

It enriches my family in beautiful ways that words will never capture. A beauty that’s felt in a laugh, a smile, a glance, a touch.

My child’s disability is not a disadvantage. It’s a different vantage point.

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To HUD Secretary Carson, From a Former Low-Income Housing Resident With a Disability

By Laura Steenerson

I write about Disability

11

May 1, 2017

I recently read an account of Secretary of HUD Dr. Ben Carson becoming stuck in an elevator in the midst of his “listening tour” of affordable housing across America.

And I have to say, I’m more than glad it happened.

No, not because I don’t agree with some of his policies or political beliefs. I respect Dr. Carson so much as an uber-talented neurosurgeon, and his story of growing up poor in the projects and being raised by a single mother to rise to where he is today is truly inspirational to me.

So why am I glad for the misfortune of someone I respect? Because it shows how low-income housing has taken a back seat to quality. As if it doesn’t matter that the elevator doesn’t work, because they are poor people anyway, so why fix it?

This is the same attitude as the one found in my old HUD building where I lived for almost 3 years before my husband and I were married. The elevator was so old and seldom worked that one summer the leasing office asked us not to use it because it was overheating from use. For a building full of elderly and disabled persons, this was not acceptable.

Do you know what ended up happening? When the building was bought for local college student housing, the elevator, deemed not fixable before, was mysteriously fixed and the entire inside of the building was gutted and renovated for the new tenants.

Dear Dr. Carson, you have now been reminded how the other side lives on a daily basis. Here is your opportunity to fix it. To give low-income housing the dignity and care its residents deserve.

Please take it.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

This post originally appeared on Be Anxious About Nothing.

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COMMUNITY STORIES

It's Time to Talk About Wheelchair Barbie

By Allison Cardwell

I write about Disability

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April 30, 2017

I’ve been called “Wheelchair Barbie” more than a few times. We share the same sparkly pink wheelchair, blonde hair, and affinity for pink accessories. Putting clothes on me is even kind of like dressing up Barbie — a difficult task with stiff, unbending limbs. I’ve always embraced the nickname. Of all the things people could call me as a wheelchair user, Barbie is hardly something to be mad about.

Wheelchair Barbie is kind of a misnomer, though. The disabled doll is actually one of
Barbie’s countless friends, and her name is Becky. Unfortunately, Becky no longer has a place in Barbie’s world. Last week Julia Franz’s article about the discontinuation of Becky went viral in the disability community. Becky’s demise isn’t simply a function of upgrading toys, it’s directly related to Becky’s wheelchair, and the ways it inconveniences Barbie and her friends.

Franz writes, “Kids and collectors soon discovered that Becky’s wheelchair didn’t fit through the doors of the Barbie Dreamhouse — that pink-swathed epicenter of Barbie’s social world. The chair couldn’t squeeze inside the house’s elevator, either.” After reportedly looking into changing both Barbie and Becky’s accessories, the decision was made to discontinue the doll altogether. Instead of looking for ways to include Becky, it was easier for Barbie to end their friendship.

I’ll be honest. At first, I thought this whole comparison was a little dramatic. It’s a doll… are we reading into this a little too much?

Then I thought of all the ways that I’ve felt like Becky. Turns out, we share more than a monopoly on pink clothes and physical inflexibility. Becky and I both know what it’s like to be an inconvenience in the social scene.

It was fifth grade, and the class was abuzz with plans for the latest birthday this weekend. I was confused — the birthday girl had told me weeks ago she was doing something with just her family this year. On the bus ride home I timidly confronted her. “Well, the reason I didn’t invite you is, we’re going to be playing a lot of games like three-legged races, and I just didn’t think you’d have fun.”

This was the first time I was conscious of being excluded from something because of my cerebral palsy. It wasn’t the last.

I felt like Becky in 8th grade, when the same girls I ate with every day sat at the top of the stairs for lunch one day. “Sorry”, they said, “we felt like sitting here today.”

In high school, when I heard about parties I missed out on over the weekend, kids were quick to say, “Yeah, I figured you weren’t into that kinda thing.”

On my 20th birthday, faced with a flight of stairs leading to a fraternity house, alcohol gave way to what one girl was really thinking, “This would be so much easier if you weren’t here.”

I guess Barbie thought the same thing about Becky.

I don’t want to evoke pity. I don’t expect my friends to move into accessible houses, or change their plans around me. I don’t even think it’s reasonable that Mattel be made to re-do Barbie’s house to accommodate Becky. I don’t think toy companies have an ableist agenda.

I do, however, think this is an opportunity for a conversation around what it really means to be inclusive. How can we do better to include people of all abilities into our plans and into our lives?

For me, so much of the problem stems from assumptions. So many of the incidents could be avoided if people had just asked me whether or not I felt comfortable attending a less-than-accessible event.

Sometimes, I might say yes. In fifth grade, all I really cared about was laughing with my friends and eating cake. Even if I couldn’t participate in every activity, I still would have loved to come to the party.

Sometimes, I might say no. These days, I have a pretty good idea of what I do and don’t like to do. I’d rather sip wine at happy hour than find myself head-level with everyone’s ass at a club.

Sometimes if I want to go to a particularly challenging event, I might ask an aide to come with me so that my friends and I can focus on just having fun.

No matter what my response is, I will always appreciate the invitation. It’s time we put these decisions back in the hands of people with disabilities, and back in the hands of the countless children who have found imaginative and adaptive ways to play with Becky, wheelchair or not.

Mattel, let’s #BringBeckyBack.

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7 Colin Farrell Quotes Parents of a Child With a Disability Should Hear