How do we respectfully write about people with Cerebral Palsy?

 

Recently, I posted an article on our facebook page about a young comedian, Jack Carroll, who has cerebral palsy and auditioned for the show Britain’s Got Talent. In the article, Jack was introduced as a “sufferer of cerebral palsy.” Beyond the content presented in the article, a discussion ensued on our facebook page about how language influences the perceptions of people with disabilities. There were a variety of perspectives presented from individuals with CP and parents of children with CP.

So what is the right way to respectfully talk about people with cerebral palsy or any other disability? I become increasingly challenged by this question both in person and in writing. Now that I am the parent of a child with a disability and the host of a website about cerebral palsy, the stakes are higher for me to get this “right”. And, I am finding that determining whether an article or speech respectfully describes a person with CP or any disability often lies in the subtleties of the description, not only the words used, but the intention behind the words.

I am reminded of a conversation I had with a very good friend of mine, Kelly. Her daughter has a genetic disorder and attended the same therapeutic preschool as Maya. The founder of the preschool was Dr. Leslie Meyer, an incredibly forward thinking and generous man whose vision for children with disabilities is still progressive within our local community almost 60 years later. He passed away a few years ago. One night Kelly and I were discussing the issue of language as it pertains to people with disabilities.  She said to me, “Michele, Dr. Meyer spoke to me about AK and he said, ‘Kelly she is doing good. She is doing real good. There is nothing worse than a spoiled retarded child.’”

Now, you may gasp in horror at hearing this statement, but consider the context. This is a man, an orthopedic surgeon, who dedicated a large part of his life to establishing a therapeutic preschool school in the 1950s for children with cerebral palsy. At the time his colleagues ridiculed him for thinking that children with CP could learn and should have a place where this would be possible. In the 1950s children with disabilities were not guaranteed an education, so rather than being in school most kids with CP stayed at home. Dr. Meyer was in his 80s when he passed away. It was part of his life’s work to support the CP community and he had the deepest respect for our children. He used the term “retarded” as a clinical reference because his generation of medical professionals used it that way. Had Kelly, or any other parent become distracted by his language faux pas, she would have missed out on the wisdom and love he was conveying. He was relaying the importance of setting boundaries and respecting children with disabilities by treating them with the same respect and guidance you would offer a typical child.

I feel terrible when friends, family and strangers struggle to find words not to offend Maya or me when they ask questions or discuss cerebral palsy. I want to encourage conversation, yet I wonder how many people avoid eye contact and conversation because they worry about not finding the words that won’t cause offense to our family. Sure, there are some well known blatant language offenders such as the “R” word that have been widely broadcast as conversational “no- nos”, but there is no layperson’s guide book of the most appropriate and respectful ways of navigating these conversations. Who you offend and how you offend them can vary from one individual or family to the next, regardless of your intention. How we evaluate the use and abuse of language to illustrate one’s intentions is a tricky matter.

In journalism I understand there is some professional guidance on the appropriate use of language, which, in the case of the article referenced above, may have been ignored. Perhaps in the mind of a journalist, describing someone as a “sufferer of a disorder or disease” makes for a more dramatic or more appealing story. When I saw this phrase I stopped reading because it bothered me but I wasn’t sure why. I tend to try and focus on the overall content being presented, but still, this phrase didn’t sit comfortably with me. After I finished the article, I thought about it more intensely. I decided that it wasn’t necessarily incorrect to say that people with cerebral palsy suffer from pain and other daily challenges. So what was it that made me feel awkward? I figured I would post the article and see if anyone else brought this issue forward, and what they had to say about it.

What I didn’t initially consider was the impact that repeated use of this language has on society’s perception of a particular population. As one parent guided me to see, describing someone as a sufferer connotes pity and victimization, two emotions I definitely don’t want people thinking when talking to or thinking about Maya. Compassion and understanding yes, but pity, no way.

As we navigate these tricky waters as a collective society, I imagine what constitutes offensive language will shift as our beliefs and use of language change. Once upon a time there was nothing inherently offensive about the “R” word. However, over time it was misused, abused, and intended to be insulting, and with that change, the word itself developed an offensive quality.

I think one of the most important aspects of using language that reflects our intentions is to check in with each other and ourselves about how we use language to express our ideas and feelings. If someone says something that hurts you, tell that person how you feel and why. Give that person a chance to understand and learn from what you see and perceive through his words. Not all people will have access to the current thinking about various disability terminology, and people may disagree on what they are, but at the very least I believe we need to get to the heart of what individuals and our collective society believe about people with disabilities/challenges. Maybe one day we will stop categorizing people for the purpose of describing them in general context and use these categories only to diagnose and treat the individual medically and to offer more helpful support/accommodations. Who knows what the future holds as our ideas and intentions shift.

When the timing is right dialogues about disability language may bring understanding, and push us to examine our intentions, ideas, and beliefs, so that we can continue to have language most accurately reflect what we mean. As individuals we all have places within us that are vulnerable depending on our personality, personal, philosophical, and cultural values. In addition, for people with cerebral palsy the degree of the disorder’s impact on their daily lives may affect their point of view. At the core of people’s sensitivity to the use of language about disabilities is the deep desire to feel accepted, respected, and loved.

As I read our followers’ comments below the article describing Jack Carroll as a “sufferer of cerebral palsy” I pushed myself to examine my beliefs, ideas and feelings about my daughter and other people who live with cerebral palsy. My thinking and my use of language shifted from that day. The change didn’t come from a desire to just be politically correct, but from having my beliefs change about the subject. Thankfully the parents and individuals involved in the discussion were kind enough to allow me to process all of this without ridiculing or judging me.

Below,

Dartania Emery, an adult living with CP, comments on the this same news article. Dartania felt strongly about the journalist referring to Jack Carroll as a “sufferer of cerebral palsy.” On our facebook page Dartania Emery has offered to host conversations, field questions, and offer insight about what it is like for her to live with cerebral palsy. She helps create understanding without judgment, opens herself up to the perspectives of parents that may contrast greatly from her own, and she isn’t afraid to ultimately share what she feels and believes. Thank you Dart!

Here is Dartania’s perspective:

This description really got me thinking about how and when one differentiates between sufferers of a disability versus people who live with the same disability. When people say that those of us with CP suffer from it, I get a little upset by it. Yes, I might suffer from the effects of having CP but, I’ve always seen myself as living with CP. My grandma taught me to never let the CP get to me. So, I’ve never complained about it. Like I said on CP Daily Living’s Facebook page, “everyone goes through pain – whether it be physical or emotional pain. Whether or not you let that pain consume you, is what makes you a sufferer of that particular pain.” A great majority of the other adults that I know who have CP, are in agreement with me that we don’t suffer from CP, we just live with it. I also take the wording of “CP sufferer” to task because I don’t like for people to feel sorry for me or, to treat me differently because I have CP. I want to be seen the same and treated the same as everyone else.

 

Maya Determines When to Talk About Having Cerebral Palsy

I learned something important on our recent trip to visit family and friends. In the last six months I have been struck by how open and jovial Maya is when talking to people about having cerebral palsy. Whereas she used to become angry and feel that everyone was staring at her, she has now moved through those feelings and ideas, and emerged with a new strategy. What I didn’t know until last week is that rather than telling people about her CP as a source of pride, she does it to try and prevent people from focusing on her disability.

I mentioned in a recent facebook post that we met a man named Don who sat next to Maya on the airplane. He thought she looked like a friendly flying companion and he had not flown on an airplane in twelve years. Maya was her chatty self and welcomed Don to our row. She gave him the details of traveling on the plane, her likes and dislikes, and all kinds of tidbits about herself that he intently listened to with a warm heart and smile. She even explained to him what kind of medicine she was taking as I took out her bottle of seizure medication. What struck me was that she didn’t mention anything to him about having cerebral palsy. This was unusual for her especially given the amount of time she had to chat with him. Often this is one of the first things she mentions to people.

I innocently questioned Maya about this and was loud enough that Don could hear. As the words left my mouth I immediately realized how foolish I had been. I had been so proud of her for taking the initiative to be open about having a disability, that I believe a part of me was trying to encourage her to do the same with Don. It was a source of pride for me that she understood and could explain to people that she had cerebral palsy and was accepting of this part of herself (at least for now). My heart sank when I saw her face and I knew immediately that I had made a mistake. I talked to her quietly for a few minutes about it. I messed up. I didn’t mean to, but I did. I never realized how discerning and strategic Maya was being in discussing her challenges with people. Plus, it just wasn’t appropriate for me to bring this up. On the airplane, she is in the rare position of not having any equipment or supports that make her appear different. Her look of disgust and embarrassment said it all. She was happy to be free to look like other kids for a rare moment and I took it away.

I apologized for the mistake I made and she immediately changed the subject. She forgives me, but I will never make this mistake again. I never realized how deeply she processed her surroundings, and was making strategic decisions to try to be more comfortable feeling different. She isn’t particularly proud of her CP, she just doesn’t want people staring or belaboring the issue, so she puts it out there to discuss right away.

I am so sorry Maya. Mommy goofed and I won’t do that again (although I am sure I will have many more things to apologize for). We are all learning how to cope in various ways, you as a kid with challenges, and me as your mom who wants to support and guide you in the best way possible. Sometimes I learn or take cues from you. Thank you for being patient with me.

Here is one of those wonderful moments where Maya is equipment free and enjoying just being a kid:

Maya’s “Cute Heaven”-An evening of multiple milestones

Maya thoroughly enjoyed herself last night. After seeing her second play, “Charlotte’s Web” a few months ago, she decided she wanted to give theatre-going another try and see “Rapunzel”. So, yesterday evening we headed to the theatre and as soon as we got into the building another parent asked Maya if she was excited. She said, “No, I am nervous.” Apparently the woman didn’t hear her or expected a different answer because the woman said, “Yes, it’s going to be great.” It’s hard for many people to understand how something like a play could overwhelm a person’s nervous system. Sensory integration seems to be an issue for many kids these days, but it definitely isn’t the norm. Maya has to prepare herself for an adventure like this. She is afraid when the lights go down, she has trouble following the quickly changing scenery, and the music and noise often startle her.

When I took her to her first play last year she barely paid attention. She looked around and focused mainly on what her friend beside her was doing. I tried to point out different parts of the stage scenery and help narrate what was going on, but she didn’t seem interested. Perhaps there was too much information for her to process at once. Fortunately, we are much better prepared now for the variety of responses Maya may have to new experiences: fear, boredom, being overwhelmed, screaming, etc.

We try not to fill ourselves with expectations when planning activities because it creates pressure for everyone. We do what we can to help Maya negotiate new experiences. However, it’s difficult to find the balance between helping her learn and experience being successful by moving through her fear, versus reinforcing it further. As she gets older we see Maya pushing herself to work through her nervous system sensitivities without our input. Sometimes she is able to navigate challenges on her own, but other times she ends up retreating from a circumstance feeling too overwhelmed to continue. We don’t always know which outcome is likely so each new activity requires collective patience, creativity and sensitivity.

We have found that on vacations (territory ripe with new experiences) it’s been her older cousin who has given her the courage to push through with success. Other times we have found ourselves in the middle of a tornado of emotions and overstimulation, where our words and intentions just add to the chaos she feels and expresses. In these cases it isn’t until much later or even the next day that Maya is able to piece together what she was feeling and discuss it with us. It’s like a storm that needs to pass in order for her to achieve any clarity.

With all of this background, you now can understand my joy as I watched Maya during the play last night. She not only listened to the dialogue and paid attention, but she also integrated the music, the plot, the sounds, her fears, her toileting, her hunger, her vision, her wheelchair, her tone, and on and on. I wanted to give her a standing ovation. At the end of the play she turned her wheelchair around full circle and started wheeling herself out of the theatre. In the last week she has been eager to try and push herself in her chair whenever possible. Gosh, have we come far from six months ago when everyone wondered if she would be able to propel a wheelchair!

After leaving the theatre we went to get Maya a sweet treat that she asked for several times during the play. We found a nearby coffee shop that also had a gift store. She said she wanted private time and wheeled herself away from us. As we both watched her I thought to myself that her body language said, “I got this one guys.” At one point when she crashed into something in the store she yelled to her father, “I’m OK Dad,” a clear signal that she knew he was watching and didn’t want him coming closer (we were watching her from a little distance away). She said she was in “cute heaven” because everything in the store was so cute and she wanted to stay there and enjoy it (alone). I think more than anything else she felt excited about being able to enjoy the play and her newly found freedom in moving through space without her parents’ interference. I can only imagine how wonderful that must feel to her. Keep going Maya; we are behind you, beside you, and we are here to guide you whenever you need us. We know it isn’t easy, but your rare blend of self-acceptance and self-confidence are leading you and us to new places.

 

 

Are CP advocacy efforts petering out because of confusion over which organizations to rally around?

Repost from Facebook post-April 13th, 2013

I am going to keep going with my thoughts and intention about bringing clarity about the US CP support/advocacy organizations. There will always be multiple organizations supporting a cause or trying to address a problem, but right now I am wondering if some of our private CP organizations can come together to begin to more effectively and efficiently mobilize our community to address some of the issues they are working to address separately (including CP Daily Living).

With lack of funds and support, the small list of organizations dedicated to CP research, funding and advocacy in the US, are struggling to meet their independent missions with a lot of muscle. Can they be more effective working in tandem on a regular basis? Can unifying their efforts bring our community together virtually and in person? Some of these discussions are underway which is exciting, but I want to ensure that for those of you who wish to add your voice, you have a space to do that. Some of the leaders of these organizations follow our page so certainly sharing your point of view here is helpful.

I personally see so many CP community issues that need to be addressed, including causation research, working on the language and approach to defining CP in the individual, lack of funding for advancing treatment, a need to create more standards of care specifically for CP (i.e the Botox article I shared the other day), addressing the needs of our adult CP population, addressing healthcare coverage gaps.

I want to get our community moving full speed ahead as efficiently and effectively as possible and it’s going to a lot of work to get us going because CP awareness and funding is needed.

Is a lack of understanding of independent missions or communication with families from some of these organizations part of the problem? Will pooling resources and working together help gather our community virtually and literally? Have parents and people with CP felt that they haven’t had an opportunity or know where to speak and with whom about these issues that affect their daily life? Besides RFTS I haven’t seen national organizations attempt to openly include input from parents, families, and people with CP as part of furthering the efforts of the greater CP community? Parents and families are a critical component of mobilizing change and support for disorders and other medical diagnoses. Cynthia has identified this critical component and brought it front and center to those people and organizations who were previously not focused on considering our input. Sure, RFTS focuses on the pediatric population, but her advocacy work impacts everyone with CP. She has been able to part the waters for other organizations to see the value in families, children, and adults with CP participating in a larger conversation.

At what point do we need to consider and make it our business to discuss what is and isn’t being done for people with CP and their families? I am making it our business today. You can begin by sharing your ideas or passing this post around and generating awareness and conversation. I see the value in getting some short-term projects going, but I also see the importance and necessity in getting smart about how we gather our small batch of funding resources and allocate them as a larger community. If we don’t discuss collaborative efforts as a community and enter into the conversation, we may end up with many tiny organizations continuously cropping up to address what they feel is independently important, but perhaps without the funding resources to effectively support any of those independent passions. I would like to see our community try and come together on what we largely can agree upon, and begin to organize our efforts so that we may be able to generate support for effectively addressing some of those issues.

Do you have thoughts or questions? Share them with everyone.

-Michele

The Open Hearts of Special Children

Repost from Facebook April 7th, 2013

Yesterday was one of Maya’s very good buddies’ 7th birthday party. There were a few kids there that Maya knew from her former therapeutic pre-school. Maya’s dad told me today that he had been a little worried about her at first. It was held in our friend’s backyard and she was in her wheelchair, and he wasn’t sure if she would be able to comfortably involve herself with the people and activities there. He then went on to tell me that he couldn’t believe how she and her two buddies played together. They each have their own unique challenges, and yet their instincts to care for, listen to, and include each other was powerful enough to melt this dad’s heart. These two dear friends of Maya’s welcomed her onto the trampoline and other activities with open arms (literally). How many life lessons could be learned from these girls?!! Writing and thinking about it now makes the tears flow. I wish we had gotten a photo of the three of them together. This is a smile that comes from deep within and I will cherish it and the memories of this day forever.

What Is Guilt Doing To You?

A repost from Facebook:

Many parents of children with CP (and other disabilities) carry tremendous guilt. It’s not something that plagues the parents who are just beginning this journey, but I also hear about it from parents with tenure on their path as well. Guilt is a form of self-punishment we can knowingly and unconsciously inflict upon ourselves every day. What are your daily mantras? What do you repeat to yourself in an effort to harm yourself? This kind of self-abuse will slowly yet surely pull you down and create all kinds of chaos as it pours into your external life. It can also drive us to fight relentlessly to push our children and perhaps make them feel inadequate in our well meaning attempt to heal them and perhaps in some way relieve us of our own pain. We are human and these are very understandable and human coping strategies. We all participate in these strategies in different ways. This is why I repeatedly say that accepting your child’s diagnosis is so intimately involved with self-healing. One of the most challenging aspects of life is finding the strength and ability to accept ourselves in our own humanity, mistakes and all. In our society I see how often we reward and dole out punishment based on outcomes. But what I have learned is that so often we are along for the ride, and despite our intentions and efforts, outcomes may have little to do with what we contributed. We can be quick to stand up to take praise when things go “right”, and we also are quick to beat ourselves up (and others) when life takes unexpected and painful turns.

Please don’t make your journey any more difficult by blaming yourself. Perhaps begin by getting in touch with your heart and your mantras. Allow yourself to express what you feel and think unfiltered so you can at least connect with the root of your pain. This is a critical step in beginning to accept yourself and your feelings. A turning point in my healing was to share the fear behind some of my guilt with my husband Blake. I finally gathered the courage to face him and hear the truth of whether he blamed me for what happened to Maya when she was born. I also wondered if the family whispered behind my back and blamed me as well. For some of you the answers you hear and are met with may not be comforting. For others you may be surprised and tremendously relieved. Whatever the outcome, it can create a foundation for tremendous healing if all parties are willing to explore their feelings. This is frightening and painful. This is the challenge of deep self-acceptance. Can we get to a place where we can rise above the thoughts and ideas of those around us and move into a place where we begin to forgive ourselves? It’s a great gift when the people we feel most connected to can offer us acceptance. Sometimes getting to this place means we all must articulate (even if it sounds horrible) what we have been carrying in our hearts and minds and be willing to move beyond it. If you haven’t been able to forgive yourself or find acceptance from those around you, I am offering you that today. I am taking you by the shoulders and lifting your chin up and telling you, “You are loved and you need not punish yourself any longer.”

May love support you today and always.

-Michele

March 25, 2013-The 1st Official National Cerebral Palsy Awareness Day

Thanks to the efforts of Reaching for the Stars and Senators Isakson and Casey, March 25th, 2013 is the first official National Cerebral Palsy Awareness Day in the United States. It will go down in history as Senate Resolution 89 as part of the 113th Congress.

It’s about more than just wearing our team’s ribbon (although ours is green).

It’s about creating understanding among people that we all have differences yet we are all human and sustained by love, compassion, and the acceptance of each other’s personal challenges.

Here are some facts about cerebral palsy:

  1. It affects more than 17,000,000 worldwide
  2. Cerebral palsy is the most common cause of motor disability in children.
  3. Cerebral palsy is estimated to affect 1 in 303 children in the US
  4. In 80% of cases the specific cause for the development of cerebral palsy is still unknown
  5. Cerebral palsy is NOT contagious
  6. Cerebral palsy does not get worse over time
  7. Not all people with cerebral palsy use wheelchairs
  8. CP receives no dedicated line item funding or research at the CDC or NIH
  9. We don’t understand much more about CP and its prevention and underlying causes than we did a half a century ago

Maya is our daughter and she is one of the 17 million people world wide whose life is affected by cerebral palsy. You may give to Reaching for the Stars.

Discovering Your Child’s Talents

Repost from Facebook: March 12, 2013

A couple of years ago our developmental pediatrician emphasized the importance of helping Maya’s discover her unique gift/s. He said so much time can be spent focusing on what isn’t working with kids who have CP (and other challenges), that it’s important that they can connect with a part of themselves and the world that fulfills them.

For Maya, I have discovered that she has a very discerning musical ear. She loves music and has the ability to detect subtle changes in rhythm, instruments, and sound quality (perhaps a chip off of her Uncle Tyler). Today we were in the car and my XM radio wasn’t working. I told her we would turn on the radio instead. Despite hearing some of her favorite songs she asked me to turn it off because the music sounded horrible on the regular radio. She said if the problem continued she was afraid I would have to buy a new car! LOL. She went onto say that she wished her ears didn’t work as well so that it didn’t bother her.

I stopped her and said, “Maya, you have a great gift and you have no idea how you may want to use it later. Your gifted ears may bother you at times, but they also bring you tremendous joy. Always remember that!”

What are your child’s gifts? If you don’t know perhaps give it some time and feel confident that together you will discover them. Despite the challenges that our children and other people with disabilities may face, there are also talents that may be hidden beneath the surface.

-Michele

We Lost Our First Tooth!

We lost our first tooth! Yay!! We didn’t even realize she had any teeth that were loose but when we finally made our trip to the dentist after so long (I am too embarrassed to say how long), we could see it was ready to fall out. So why did I wait so long to take Maya back to the dentist? Well, to tell you the truth beyond the packed schedule that she has, I dreaded taking her to a place that causes her so much anxiety. From the moving chair, to the noise that the forced air makes, and the list goes on. We finally returned and the night before we discussed her concerns. Among other issues, she told me she didn’t want to be in the room with the cow on the wall because it scares her.

When we arrived I let the receptionist know that Miss Maya was afraid of the cow room and to please make sure she is placed in another room for her dental exam (as if we were checking into a hotel!) They couldn’t believe after so much time had passed that Maya would remember the cow on the wall. I didn’t remember! Anyway, she did great this time!! She took deep breaths, laughed, and she took tremendous responsibility for her concerns and well-being. She told the dentist to be careful with her tools because she has a sensitive gag reflex (which she demonstrated), and when the hygienist asked me a question she attempted to answer it.

I can’t always take Maya’s fears away or make her nervous system less sensitive, but I can help validate her concerns and let her know that it is perfectly acceptable and important for her to express them. The staff at the office was wonderful and took the time to explain and demonstrate what they were going to do before they did it. It makes all of the difference in the world to have a doctor and staff with a patient and gentle disposition.

In this picture you can’t see where her tooth fell out (it’s on the bottom) but by the time I got her to demonstrate it for the camera she was beyond irritated with me.

Throw the Timeline Away!

So many of us get stuck comparing or thinking about our child’s development as it relates to his/her typically developing peers.This is a normal and understandable approach. We want our children to be able to navigate the world much like their peers and as quickly as possible. In the toddler years when a child has been diagnosed with CP, many of us look for signs for how our kids are developing and how much help they may need going forward. It can be a bit scary to see an ever increasing gap between what is typically expected and what you see your child doing. Out of a need for self-preservation I stopped calculating and trying to think of ways to make Maya’s development match up more closely with her same aged peers. I now keep goals in mind, but I have learned to relax my mental grip on the timeline. This has freed me emotionally and allowed me to move into a place of further acceptance of Maya’s challenges (or perhaps the acceptance came first and allowed me to do this). By relaxing my attachment to a certain timeline, I was able to breath easier and begin to work through my fear and anxiety separately, rather than having them become entangled in how I structured Maya’s therapies and practice time (my fear and pain was ultimately being channeled into how I structured her daily routine). Now, I feel grateful and pleasantly surprised as new skills emerge without the drilling and constant pressure associated with trying to force Maya to attain skills when she isn’t ready. It’s not easy to work through these pieces, and to know how much to push your child and when, but as you gather more awareness of what motivates you in your interactions with your child, you will have more clarity.

Big hugs on this challenging journey,

Michele