Tuesday, July 15, 2014

The shocking realities of raising children with disabilities, and why society needs to know


If you would have spotted me and the kids when we hit a sushi restaurant this weekend, this is what you would have seen. I sat next to Max, tucked two cloth napkins into his shirt collar and spread two on his lap. I crumbled his avocado rolls and plopped them into his miso soup, because they're easier for him to eat that way. Then Max did his best to hold the porcelain spoon. He insists on using it, rather than one of the adaptive spoons I tote in my purse, but he kept dropping it because the narrow handle is tricky to grasp. Meanwhile, the napkins got sopping wet. "Do you want help?" I asked, finally. "Yes!" he said. Then I fed Max the rest of his meal.

If I didn't have a child with cerebral palsy, I might glance curiously in a restaurant, too. It's unusual to see an 11-year-old kid being spoon fed by a parent. This partly explains the ongoing buzz about NPR's recent story on two aging parents carrying for their teen with cerebral palsy. Written by Katie Orr, Destined to be Caregivers did not hold back on the realities of parents James and Judy Lee and 16-year-old Justin: the diaper changes, the daily stretching of his muscles, the regular flow of therapists in and out of their home, him sleeping in their bed so they can keep an eye out for seizures.

What riled some people up was a photo of James carrying his son, naked except for a diaper. Photographer Andrew Nixon summed up the response on Twitter:


Many of us, especially parents of children with disabilities, saw only love in the photo. As commenter Christine Hoang said on NPR's Facebook post, "Many people are focusing on the son's undergarment. When I saw the photo, my focus was on the father's face. He appears loving, gentle and even perhaps happy. He and his wife love their son, and in the midst of their hardships and sacrifice, they also find the blessing and the joy in behind is parents—and that is the essence of good parenting." 

Others spoke of these parents "unconditional" and "selfless" for their son. Some suggested they would never "force" a child to keep living that way. This is a whole other story; people often fail to understand that these are our children, with their unique needs, and we love and care for them because we are their parents and that is what parents do. Judy Lee jumped into the comments on NPR.org, noting that Justin is alert and happy, enjoys his friends, music, TV and swimming and many other parts of life. As for those people who thought they should "let him go," she said it "would be nothing short of neglect and murder. He's a healthy young man, for which we are eternally grateful. His life is cherished...."

And then, there were those who objected to that photo—a violation of Justin's privacy that compromised his respect and dignity, they said. They felt NPR could have chosen other photos. They wondered whether Justin would have wanted to run that photo. This from a society that is obsessed with reality TV, and all its invasive spectacles. 

James and Judy Lee were fully aware that a photographer was documenting their family. As he noted in a post NPR put up about the photo, "We tried to get a wide range of experiences that the family went through. And part of that is bathing your son, because he can't do it himself. The Lees were very comfortable being photographed.... His parents demonstrated pretty thoroughly that they really have his best interests at heart.... I think the photo served the purpose of showing a father taking care of his son. If it was just Justin, I think that would have been disrespectful. It would have crossed that line."

The truth is, the realities of raising a child with physical challenges are often not pretty, however lovingly they are handled. They involve bodily functions and fluids that people typically associate with infants and the elderly: bed wetting, butt wiping, drooling, spoon feeding, sponge bathing. There are plenty of people who are already uncomfortable with people who are disabled; these details may make them really squirm, perhaps why some of them hyper-focused on that photo. If there was a shot of Justin being carried, say, on the beach in swim trunks, they probably still would have felt unnerved. 

Most of the online comments I read from parents of kids with special needs pointed out the same thing: People don't know what's it's like to care for a person with disabilities. As mom Ellie Lawrence noted on the Parenting Special Needs Magazine Facebook page, "I think some people...are afraid of knowing what we as parents have to do.... I was giving some water to my son through his g-tube in public one day and all you could see was his tube, his shirt covered the rest, and a woman said 'That should be done in the bathroom or at home' and before I could say anything the lady's own child said, 'Mom he's thirsty, I don't drink in the bathroom, why should he?' Out of the mouth of babes." 

In agreeing to participate in the NPR story, the Lees did what other parents of kids with special needs regularly do through blogging and social media: let people in on their lives. Although I can't speak to why these parents did this, I'm betting they believed that giving others a glimpse into their daily existence would be in the best interests of their son. Perhaps they want to raise awareness about the dearth of financial assistance and resources for people with disabilities. Judy Lee receives about $10 an hour to care for her son, as part of California's In-Home Supportive Services. This month, proposed budget cuts could slash the amount of hours for which she receives compensation in half.

Sharing our families' lives is one way to get a discussion going and bring about change. Revealing what goes on behind the doors of our homes is hardly disgraceful; what's disgraceful is for kids and adults with disabilities to remain a forgotten part of society.  

Image: Screen grab/YouTube video by James Lee

20 comments:

  1. Exactly. People don't know what it's like. Justin may not have wanted that photo shared, but his parents are not only his caretakers, they are his decision makers. If they felt it would raise awareness and was in his best interest, then it was.

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  2. I do not find the photo offensive at all. It's basically my life with my 11 year old daughter. I would take pause at having a photo of her in just her diaper because I do agree that it is a question of dignity. If Justin was okay with it, then absolutely fine. If not, then no. But was he asked or was it just assumed he didn't have the capability to understand? If you didn't know my daughter very well, it would be easy to think asking her a question like this would be pointless but the fact is, she understands so much more than the world in general expects her to. She can make choices when given the opportunity so I'm just wondering if Justin was given the choice? No judgement for the parents being fine with the photo, just curious.

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  3. I am so glad you wrote this - I read that article and could not believe the response/follow up on NPR (usually my favorite). I was so angry by the public reaction. You try carrying a 16 year old kid for their shower, or to the toilet, or anything else that those amazing parents have to do everyday for their son. And what was their reward for opening up and sharing their lives? More cruelty and horrendous evidence of lack of public awareness or basic empathy. Shame.

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  4. My sister became disabled due to MS. We went to an adaptive equipment show - basically a trade show for those with disabilities - and noticed how a lot of it is to address the same needs - eating, transferring, and bathroom. These are the realities everyone absolutely has to cover every single day, and dealing with it when the other person is in an adult-sized body is difficult. I thought the photo was beautiful, because the love shines from the father's eyes.

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  5. One of my favorite things at Morgans Wonderland was an adult sized changing table. I think they should be mandatory!

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    1. I agree wholeheartedly! It is NO easy task trying to change a child that almost 5ft. tall and weighs 60+ lbs.

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  6. I am not really familiar with physical disability culture, but I understand the isolation aspects. Since I am socially awkward, PE is torture

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  7. I've experienced the swim trunk issue. The learning center I work at took a field trip to the local sprang park. One of our kids (with CP) was without a shirt. We got several snide remarks one about how what he was wearing was "inappropriate." I was extremely annoyed. Then, same park, same day, we had another incident. A little girl saw Cameron (the child with CP) and decided she wanted to be friends. She gave Cameron a shovel to scrape across the ground (he likes the sound), and she would fill buckets of water to (gently) pour on him. Cameron loves it.

    As we were leaving, the little girl's mom asked for the shovel back. We handed it to her, and the lady grasped it with the tips of her fingers, like it was 'diseased' or something. We were shocked. I was watching Cameron the whole time and it wasn't as if he had put the toy in his mouth or anything. One of the employees pulled a five dollar bill out of her purse and handed it to the woman, to cover the cost of the shovel. The woman dropped the shovel like it was burning coal. I just do not understand why some adults are so disturbed and/or disgusted by people with disabilities.

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  8. As alway, Ellen, wonderful insight and perspective. One thing I think many people don't understand when they ask about whether Justin would have "wanted" this is that he may not have the cognitive ability to make that decision. While I don't have a special needs child, I feel fortunate to have an interesting insight because my uncle worked with adults with cognitive challenges and I had the privilege to spend a lot of time with him and them when I was a child. Even as adults, all of the clients at the center were brought their by their parents or another caregiver. Just because the chronological age may indicate that someone has the ability to make their own decisions doesn't mean it's appropriate. Not all special needs come with cognitive delays, and it's important to know that.

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  9. Hi Ellen, it's been a few weeks since I've read your blog, lots to catch up on xx we are on holiday right now and we have learnt a lot about disability access in Europe. Bron x I have a new blog now too xx

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  10. Thanks for sharing this experience and for having this experience with your son. This is real life, people of all abilities needing a variety of supports to do every day things and parents loving and caring for their children.

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  11. I'm disappointed that people would make those comments. I wasn't offended in any way about that picture or the story. All I say was the dad's face and it looked to me like he was happy to help his son. I would do it if my son (Ds) needed it in a heartbeat. That's what you do when you're a parent--you help your children.

    No one knows what life will bring.......some people are born with disabilities while others become disabled through accidents or illnesses later in life. If those parents, who said that the Lee family should just let Justin go, were to find out ahead of time that their own children would need round the clock care as adults after a car accident, would they decide to let their own children go so they don't have to deal with that? No? I didn't think so. We all love our children, no matter how they come to us, no matter what they come to us with.

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  12. I understand completely! People have no idea and the way they look at you in public is amazing!! I take my Grandaughter everywhere but have to say I feel more at ease and understood at events where other Special needs families are and have an understanding! I actually am almost inviting people to say something to me!! God only gives Special Needs to Families that he know can handle them!!!

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  13. I can understand the concern about showing him in his diaper. He's almost a grown man, and is entitled to his dignity, which may mean that he would not feel comfortable being shown in essentially his underwear. I've seen this discussion before and I know the argument goes both ways, and I can understand why the Lee's chose to use that photo, even if I'm not sure that I agree with it.

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  14. Jessica LinquistJuly 15, 2014 at 6:59 PM

    so interesting how your experiences impact your perceptions. As a parent of a 6 year old son with severe cerebral palsy there was nothing odd or exceptional to me in this photo. In fact my first thought was "that will be us in a few years... I better start working out more". I do believe more of this sort of coverage and education is important for our society and will ultimately result in more compassion for those living special needs.

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  15. Wow, I hadn't heard about this story (busy taking care of my disabled adult daughter and my elderly mother) and missed all the fuss. I just see love in the father's face . I'm also thinking there's probably exhaustion behind that expression, too. I don't think the average person who doesn't have any thing to do with the disabled have any clue what it's like to take care of someone in this way who is not an infant. It's a non-stop, exhaustive never ending process. I don't know that God gave me my daughter because I can handle it all better - there are a lot of days I don't think I handle it very well at all. But I keep plugging along because I don't have a choice...and neither does my daughter.

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  16. The comments about letting the boy go are very upsetting. They are not keeping him alive by machine. He is breathing on his own. My son is very similar to Justin and is 9 years old. There is not a choice to let them die - they are not on a vent. I guess you could stop feeding them but that is cruel and neglectful and I would think would be murder. Our precious children deserve love and proper care. They have beautiful souls and it is not their fault that they have brain injury etc. I wish people would understand that it can happen to anyone and at anytime in their life span. Accidents happen etc. I know a precious girl who was freak'n bit by a misquote and it gave her West Nile Encephalitis causing severe brain injury. She lived for about 4 years after that. Her family did everything they could for her. Brain injury and or a disability does not discriminate. We need to have compassion and services in place to help when it does happen.

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Thanks for sharing!



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