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I won’t apologize for writing about my daughter

26 Dec

Somewhere on the Internet right now, there’s an argument going around. It’s not a new argument, I’ve seen it before. What may be surprising is that it’s an argument in the disability blogging world, about whether or not parents should write about their child’s disability.

Needless to say, this has caught my eye, as I am the parent writing about her child’s disability.

The arguments aren’t necessarily horrible, in fact, many arguments against parents writing about their child’s disability are logical. Things like “What about when your child grows up and reads this?” and all its variations, “What about your kids friends/schoolmates finding this stuff?”, and “What about your child’s privacy?”.

Like I said, legit reasonings.

However, where they lose me is when they argue that only the people with the disability should write about it. That as a parent, I shouldn’t blog about my child’s disability but instead, look to those with her disability to do the writing, and read their experiences. That as the parent, I’m not the one who the disability affects, therefore, my experiences are invalid.

I took an informal poll of our household, asking the question “Do you think Maura’s disabilities affect you?”

“Oh heck yeah!” her sister responded, then quickly added “But in a good way.”

Her brother eyed me and said more thoughtfully, “I’ll just leave it at a “yes”.”

“It’s okay, I know it’s not all good ways.” I stated. The brother looked relieved, the sister looked thoughtful. “Like when Maura eats.”

The brother who loathes the loud way Maura chews shuddered. The sister blinked. “Oh yeah.”

What can I say, I wasn’t raised in a sugar-coating kind of household, and I don’t raise my kids that way. Maura’s amazing and wonderful and can be just as annoying of a sibling as the rest of them. And in keeping with the theme of honesty, her disability doesn’t just affect her. It affects the whole household. It affects so much of our life that the lines have become blurred for me, because I think of Maura’s disabilities when it comes to everything. 

For example –

I can’t just buy her clothes. I have to make sure they’re clothes that will bolster her independence. That means no buttons, no zips, no snaps. Elastic waists are our friends. Tiny pearl buttons are our enemy.

Having a hand-held shower makes bathing her so much easier, as I have to help her at least with hair washing still.

In house-hunting, we have to have four bedrooms still, because Maura needs her own baby-proofed room. We can’t have a yard that’s terraced steeply because she might fall. Our yard must be fenced, and the gates must be locked from the outside, so that Maura can have the freedom of playing in the yard without going free-range in our neighborhood. The less stairs the better.

Every outing comes with a quick-escape plan in case of meltdown, seizure, injury, bathroom accidents, etc. Aisle seats are always asked for. Parking is always considered, as is the comfort of others (aka, if we’re at an event where Maura being loud isn’t kosher, a parent will cut and run with her, so not to ruin it for others.)

I’m seeing a personal trainer, because while it’d be nice to lose weight, my main motivation is to be able to wrangle Maura without injuring myself. Because the girl is stubborn and now as big as me and figuring out she’s almost as strong as me. I have to be able to move her on my own, whether it’s getting her stubborn self out of bed for school, or if she injures herself and I have to assist her in any way. I have to be prepared to do it myself.

I hide food to keep her from eating it all in one sitting….wait…I do that with all the teens. So that’s actually normalish. But so much of it has become our normal as well, just like so many other families like us.

Maura’s disability isn’t a little bubble that keeps her contained. Maura’s disability is a glitter bomb, both shiny and wonderful and a little annoying at times when it gets in your food. You can try all you want, but once a glitter bomb explodes in your house, that’s it, your house will always have glitter. You can get used to it, come to enjoy all it’s sparkle while being annoyed that there’s a bit of glitter in your coffee. You live with the glitter and adjust your surroundings to work with the glitter.

And as a writer, I write about that glitter.

But some people think I shouldn’t, that I should leave that up to those who produce the glitter…or have the disability.

Here’s the thing though – I can’t look to adults like Maura to write about their experiences so I can learn from it, because as Maura’s sister put it “Most people like Maura can’t write.” That’s our reality. Maura’s moderately intellectually disabled, which sounds not too bad until you realize the range goes Mild, Moderate, Severe. She’s in the middle, the moderate, the people with IQ’s between 30 and 50 points. She’s also one of the many kids without a diagnosis. There are precious few places to go when your child has no label, and honestly, those writing about life with a disability aren’t like my daughter. Yes, I can still learn from others, and I have a natural curiosity about people, so I will keep reading about other people’s differences and disabilities and experiences.

But I won’t stop writing about my daughter.  I am her voice. She can’t advocate for herself, so I shall do it for her. She can’t share her experiences with other parents of kids like her, so I shall. Yes, it’s important to listen to those with the disabilities, but that doesn’t negate the experiences of those of us who live with the person with the disability. I won’t be silenced by those who say my experiences aren’t valid. I will still be honest in the sharing of our lives. I will still continue try to be as respectful as possible of Maura’s life and those involved in it. But I won’t be silenced, mainly because of the readers who have reached out to me to say “Thank you for sharing, I was feeling alone in this.” or “I understand better now what those with disabilities go through, thank you for that.” or “Wow, I never thought of it that way, you’ve made me really think about my word choices.”

I may not have Maura’s particular disability, but I live with it. Hell, I’ve embraced it in all its glitter bomb sparkliness. It is as much of my life now as it is hers. I’ve accepted that fact, others should too.

She loves me. You should too :D

She loves me. You should too 😀

 

 

 

 

 

 

 

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32 Responses to “I won’t apologize for writing about my daughter”

  1. Katie December 26, 2015 at 4:07 pm #

    As a care provider for individuals with developmental disabilities, I really appreciate your blog- especially when you share the ins and outs of daily life with Maura. Not only are the anecdotes cute but they provide insight into the side of life that care providers don’t see. Reading your blog helps me to remain open-minded and it reminds me why I do what I do- both for my clients and for their families Thank You and Happy Holidays!

  2. Kristi Swanson December 26, 2015 at 4:35 pm #

    Once again, you have read my mind and written my thoughts. The similarities between Maura and my Emily are uncanny. And your words ring true to me like nothing I have ever read before. Thank you for your stories, thoughts, observations and ideas! Please keep up the writing. It keeps me motivated to keep going sometimes when I feel like I’m getting nowhere.

  3. What's On Lauri's Mind December 26, 2015 at 5:04 pm #

    Spot on once again. And you are not writing from Maura’s perspective, but your own, how you experience Maura, her disability and how her disability impacts you, your family and Maura. Who better to look to for advice and shared experiences than the caregiver? So many well intentioned people offer advice based on their experiences with their typically developing children. They have little credibility in my book. But reading about Maura, I can say, hey, Wendell does that, maybe I’ll try “X” too. Keep writing as you do, and if someone doesn’t like or appreciate your writing, they don’t have to read it! I’m sticking with you though!

    • Vincent Smith December 27, 2015 at 2:25 am #

      Who better than people living with disabilities? We’ve dealt with the oppression, not our caregivers. They are only witness to it.

      • Julie January 4, 2016 at 12:23 pm #

        I believe what the family goes through and what the child with disability in the family goes through are two different experiences. This is the same with any other experience, two ppl in two different positions with experience (obviously) two different things. When my sons feelings are hurt by his friends that hurts me too. Because I am his mother, it affects me. Obviously he’s having his own emotions towards the situation. Same with any other aspect of his life. He has his experience, the rest of the family certainly has theirs. In my experience, family members are deeply affected. Depression, disconnect with their brother, anger. If we need to leave because my son is having a meltdown, we all feel the effect. Not just my son. Everything he needs, experiences, expresses affect us all. Good and bad. This is no different than any other member of the family having a problem. However, my son’s experiences are much bigger, louder and longer. I think it’s vital for parents to share these experiences, not only to offer insight to others, but for their own release. Not every friend wants to hear about your 12 year old’s latest meltdown every time you get together. and to be honest, I don’t really want to bring everyone down with it either. Blog on my dear! This is your life experience also. And for parents, exterior caregivers, teachers, this is educational.

      • Dana January 13, 2016 at 11:05 pm #

        Right. Caregivers don’t do anything but watch you be oppressed. They don’t take care of you. They don’t go through the experience of being shut out right along with you. They don’t deal with the extra expense, they don’t deal with the stares and the rude comments, so on and so forth. You’re in a bubble, you’re the only one experiencing the disability in any way.

        No. Really no.

        And caregivers writing about people with disabilities does not at all prevent people with disabilities from writing about themselves. Heck, if some caregiver is telling lies about the disabled person, I would hope the disabled person would be able to speak up and set the record straight.

        Even if that’s not the case, I would want disabled people to be able to tell their own stories anyway. The more sides of a story we hear, the better the understanding of the entire issue. The more the merrier, I say.

        So write on. No one is stopping you. Unless they’re physically blocking your access to a computer, in which case I fervently hope you will be able to get justice for yourself swiftly and decisively.

        I’m not a mother of children with severe disabilities. My son has a central auditory processing disorder and my daughter was born with VUR which has since been corrected, and that’s about the worst of it. But I don’t see this as much different than someone telling me that only my child knows what it’s like to have kids. Really? No. The parent-child relationship has two sides to it and I may have forgotten most of what it’s like to be a child but I sure know what it’s like to be a parent and to have my world shrunk down and many opportunities taken away and my day to day ability to just live my life hobbled because I’m raising a child. There is much joy in the endeavor too, but I wouldn’t be doing anyone any favors if I acted like it was fun and carefree all the time. (And it CAN be fun, but it is never completely carefree.)

  4. bluerosegirl08 December 26, 2015 at 5:52 pm #

    Glitter bomb! I like this. I am one of those who can write for themselves about the glitter that i spread and do but others can’t. Someone has to be their voice because their experiences and lives are valid too. I have been keeping up with you guys for a while now and the wau you manage Maura’s differences is so awesome. You shoulc write brcause her disabiltu affects you every day/ Mine still affects my parents and sister even though I’m grown. Keep on, everyone else can shut up
    .

    • phoebz4 December 26, 2015 at 5:55 pm #

      Thank you for that!

  5. saracvt December 26, 2015 at 9:05 pm #

    I’ve heard this argument. I agree, they are legitimate concerns. But they don’t give the full story.

    Reasons like this are why I have never, ever referred to my children by their given names on the ‘Net–I call them ‘Youngest’ & ‘Eldest’.

    But their conditions do affect my life & my emotions & therefore I have a valid viewpoint, in my own voice. Also, blogs like yours help moms like me realize they’re not alone or crazy, & that means a lot. So I will write about my experiences–in fact, I’m writing a book now–& if my daughters’ conditions pop up in my experiences, well, that’s natural, yes?

  6. Darcy Pennington Arnold December 26, 2015 at 9:33 pm #

    Everyone needs an advocate! Sometimes those of us who are caregivers need one more than anyone with any type disability. You go, girl!!

  7. Vincent Smith December 27, 2015 at 2:23 am #

    You are not your daughter’s voice. Every human being has their own voice, and you talking as though you are the voice of her completely erases the fact that she has a voice somewhere inside her, just waiting to get out. There are many other ways to communicate besides talking and writing. Also, you should talk as your own voice, because you are sharing your experiences with her, not how she feels, but you will never truly know how she actually feels unless you find a way to communicate with her. You can still talk at your voice and advocate for her, but speaking as her is completely disrespectful to her.

    • Maysoon Zayid December 28, 2015 at 9:21 am #

      You really are NOT your daughters voice. She has her own voice and I hope she finds a method of communication someday. I support your desire and right to write as a parent though. I would teach my child not to shudder or be annoyed by how someone eats when they have no choice. Thats not sugar coating its teaching tolerance and decency. It’d break my heart if I knew my siblings were annoyed by how I ate. I’d definitely eat less. I am not you though so all I can pray is that you’ve changed the names to protect your child’s privacy. You can still tell your story but will do less harm if you respect her rights too.

  8. Rhonda Greenhaw December 27, 2015 at 2:30 am #

    That is a very simplistic analysis of the criticisms by disabled activists to your writings about your child. It isn’t that you shouldn’t ever write about your child’s disability, but it is that you cannot write about it from her perspective. It is that rather than seek for ways of empowering her own voice, you presume to speak for her. It is that you highlight experiences of hers that had she been neurotypical, you likely would not have – or if you had – it would have been considered cruel.

    Please listen to the voices of the disabled community. My own understanding of myself, my daughter’s disability, and my ability as a clinician increased one hundred-fold when I did!

  9. Rhonda Greenhaw December 27, 2015 at 2:34 am #

    Have you polled on your other kids and posted about how their embarrassing habits bugged everyone???

  10. sed30 December 27, 2015 at 7:40 am #

    Without you talking about daughters disability how else is the world suppose to know what you and your family go through every day? Thank you for sharing.

  11. susie christensen December 27, 2015 at 10:31 am #

    Presuming competence is always right…..and unfortunately that is not what you do. I am the mother to a disabled son. I am also, by profession, a special education advocate. I advocate for the students, not the parents. I find your stance to be extremely self serving and demeaning. My son’s life was not “created” for public display, unless of course he chooses it to be so. So until and unless he chooses that, I would never ever, choose that for him. That would be a complete violation of trust. It is downright creepy actually that you even attempt to “own” someone else’s disability…..,”It is as much of my life now as it is hers.”. That is, simply, wrong.

  12. DeeScribes December 27, 2015 at 10:32 am #

    I think you can write about your experiences as a parent of a child with a disability and still be respectful of your child with a disability. Your reality will be one which is different than hers though. Your day-to-day will not be the same as hers, but other parents will relate. Peer support is not just important for people with disabilities. It is important for parents too.

    The online disagreements I have seen related to the site in question has to do with which audience they claim to support. If they want to support parents of kids with disabilities, that is fine. If they want to support people with disabilities, they need to change the tone of some of the articles they publish. A parent’s voice is important but it should be presented in a respectful manner.

  13. saracvt December 27, 2015 at 6:09 pm #

    @Vincent Smith, @Susie Christensen @Rhonda Greenhaw,

    If you look at the title, it says “I won’t apologize for writing ABOUT my daughter”, not “FOR my daughter.” Phoebe has a legitimate voice all her own, and her daughter’s condition impacts it. How could it not, when she is the primary caregiver?

    This is her life, & Maura is part of it. A large part, but only part. There are many entries that do not mention her at all, such as when she discusses her college days. Should she not be allowed to speak about her life because her child is disabled? That would be just as unjustified as if she refused to let Maura write for herself. They BOTH have legitimate voices that should not be silenced.

    Also, do consider the point that she is not taking over Maura’s voice & refusing to let her write what she will, she is writing about Maura because Maura cannot write about herself. She is filling the void that Maura cannot fill. It is a subtle point, but a valid one.

    And “presuming competence is always right”? That’s a sweeping statement that doesn’t really reflect reality. In one of my daughters’ case, if I presume she has the ability to toilet herself, and she doesn’t because she can’t, all that happens is she feels like she’s disappointed me and her sense of inferiority grows. How is that always right?

    There are multiple examples like that I can give but that one jumped to my mind first. You guide them down the path to independence, but you never “presume” they can do it competently. Even when they’ve done it before, lapses do happen. And if they need help, you give it. If not, you applaud–for their sake.

    • susie christensen December 27, 2015 at 8:24 pm #

      do not equate competence with physical/emotional/intellectual ability. Competence comes in many many forms as does ability. Doing something “well” is extremely subjective, as one person’s job done “well” may not look like another’s. This woman is speaking for her daughter…..being her “voice” without her daughter’s permission. Total, complete fail. Period. She also states ”It is as much of my life now as it is hers.”……she is now taking over her daughter’s existence as her own……That is sick, self serving and has everything to do with her need for attention and nothing to do with supporting her kid….

      • saracvt December 27, 2015 at 8:42 pm #

        “Competence: the ability to do something successfully or efficiently.” That’s from the Oxford dictionary. Of COURSE I equate competence with physical/emotional/intellectual ability, because that is what the word literally means. May I suggest that if you have a different concept in mind, you find a different, more accurate word to describe it?

  14. SP December 27, 2015 at 7:31 pm #

    Perhaps this video may be informative. It may be insightful based on that you said, ” I am her voice. She can’t advocate for herself, so I shall do it for her.” Please watch this with an open mind and please do not feel like I am criticizing you. I think this video is insightful to anyone who has loved one with a disability. I have an immediate family member who is deaf. It was enlightening to watch. https://www.youtube.com/watch?v=xMBzJleeOno

  15. Julia Pillai December 27, 2015 at 7:32 pm #

    You really don’t get the arguments the disability community are arguing.

    I believe that parents can write about their underage disabled kids so long as
    -they respect privacy (no specific medical details, no photos no names)
    – they are respectful to their child and the child’s community (so say if your child is autistic, the parent shoulders to be as aware and understanding of the nuanced discussions in the autism. Community)
    -so long as they write well
    -so long as their writing doesn’t silence disabled writers. There’s a need for balance

    This is pretty much what everyone is arguing for in the disability community. We aren’t saying that parents aren’t allowed to write. We are saying that unfortunately
    – many parent bloggers are ableist,
    -do not respect privacy of their kids,
    – silence disabled writers
    -write poorly and in a manner that is ignorant to the issues discussed in the disability community

    We aren’t asking you to apologise, we are asking you to be more mindful. And frankly we don’t appreciate overly emotional irrational and mindless responses like this.

  16. Emily Ladau December 27, 2015 at 11:07 pm #

    I understand where you’re coming from, because your experiences as a parent are valid. That being said, the issue is not regarding blogging about your experiences as a parent – it’s the way in which it’s done that often raises red flags among the disability community. It’s important not just to be “as respectful as possible,” but to be respectful, period. Respectful to your child, of course, and respectful in that you give space to people who are actually disabled without speaking over us or for us. There is too much division, when we should be working together. I urge you to read this: http://www.thinkinclusive.us/who-should-speak-for-the-disability-community/

  17. 3rdgenerationmommy December 28, 2015 at 11:31 am #

    Advocating for our children is our job.

    The way I look at it is…Maura has her story, her experiences, and one day she may share them with us (wether she can write them or not) and you have YOUR story, your experiences, and you are sharing them with us now.

    Other parents with children who have diabilities are going to learn from your experiences and what you have done in each situation. Those parents are feeling less alone in their daily lives because you are sharing.

    Obviously it is important to read the experiences of those who are disabled but it is also important to read the experiences of those who the disability affects as well. I would be nowhere without the blog of many parents who face the same difficulties and triumphs with their children as I do with my child.

    Thank you for your honesty in your blogs. I, personally, appreciate your story.

  18. Jasmine December 28, 2015 at 11:16 pm #

    What I don’t understand is why people feel that because they’re not comfortable with something someone has written, no one else should be able to read it. If you don’t like to read it don’t read it, but there’s no need for people to get all fascistic about it.

  19. MSN January 1, 2016 at 6:53 pm #

    Brilliant piece. Thank you for sharing. Disregard the hostility – you have every right to share your story as you are writing it together.

  20. heather lapierre (@heatherlapierre) January 4, 2016 at 5:53 pm #

    Um, ok, wow. I could’ve written much of this. In fact, I love reading about other parents, especially parents of older children like mine, to see what’s ahead, and how they’ve handled things (hiding food, babyproofing, etc.). In fact, my girl even looks just like your girl! I can’t wait to dive in an read more about you guys. Thanks.

  21. Karin Willison January 5, 2016 at 4:38 am #

    I’m an adult with a disability who was once a disabled child. I grew up before the Internet was popular, so my parents never had the benefit of a community of fellow parents sharing similar challenges. They also didn’t have the same level of access to the voices of adults with disabilities. My parents did a lot of things right, but also made mistakes. They were very focused on “fixing” me physically, when all I wanted was to be accepted as I am. But as I got older, my mother became involved with the disability rights community, met successful adults with disabilities, and realized that her daughter was going to be OK, even though I use a wheelchair and always will. If she had been online, writing and reading what others have to say, would she have come to this realization sooner? I tend to believe so. Sadly, she passed away years ago, so I can’t ask her.

    Parents of disabled children and disabled adults need to avoid judging each other and start a dialogue. Personally, I’m not offended by most parent blogs and postings. However, there are a few that cross the line, particularly when embarrassing topics like toileting are discussed in detail and the child’s name is used. Parents need to think twice before posting details like that in public. I also believe that the type of disability matters. I have a physical disability; I do not have any intellectual delays. I can speak for myself. Some people with cognitive disabilities can speak for themselves, too, but not all. I believe you when you say that your daughter can’t. I read what you write, and that you’re doing everything possible to help her communicate and to have a voice. But unless and until she does, it’s your responsibility to speak on her behalf. You’re speaking for her, not as her, and that’s OK. You’re helping other parents, as I wish my parents could’ve been helped. I encourage you to listen to all perspectives, but ultimately this is YOUR blog, and if people don’t like it that is their problem.

    • phoebz4 January 5, 2016 at 11:05 am #

      Thank you Karen. I truly appreciate your response.

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