Not So Very Special Needs

I do not have a special needs daughter in the same way that I don’t have a Down’s daughter in the same way that I am not a special needs mom. Ah, deep in denial, you say. And after all these years!

Not really. It’s just that I have become convinced that all these terms take away from the most obvious of obvious—that our children, from the moment they are born, are children first and an integral part of our families, communities, and society just as they are. And when people ask why disability it not a part of mainstream discussion, I think the answer is, in part, in how we name ourselves.

I believe that Jessie (and every person labelled disabled, or labelled in any way) does not have “special” needs, but very typical and basic needs that sometimes (often) have to be met in special ways. If we allow ourselves to admit to just how typical these needs are (for sustenance, shelter, love, a sense of belonging, an education, and a sense of being valued, to paraphrase Maslow’s oft-quoted hierarchy), we can stop focusing on making the story be about difference and start making it be about diversity. We can stop people in systems from saying it’s just all too much, too exceptional, and there is a place (a special place) for that, and start doing whatever it takes to meet those very basic and typical needs, which sometimes might be in a special place.

Maslow's Hierarchy of Needs

Once we, as parents, shifted from seeing Jessie’s needs as special (hence outside the realm of typical or normal), we became more inspired advocates, enticing service providers, educators, and administrators to see Jessie as her friends and family did—as having very typical needs that we had to get creative in meeting. She needed friends, an opportunity to learn, the chance to be valued in her community, the chance to contribute.

And once we saw Jessie’s needs as typical, our allies and advocates became the world at large, not just other parents of children with so-called special needs. And our (and Jessie’s) world and experience expanded ten-fold. There is some great beauty in the common; in all the variations and striations and unique flicks of the personal that emerge, but do not submerge what joins us. And somehow, when we allow ourselves to let go of how we label the need, but focus instead on how we meet the need, we create a space where we can struggle meaningfully, as a family, a community and a society, with how we can make this happen.

I will admit, I did not come to this on my own. It was actually the other parents in our original school community (a small, creaky, no-gym public school with sometimes fewer than 100 students and principals at the tail-end of their career) who kept pointing out that Jessie had the same needs as their kids, just sometimes we needed to meet them in a different way. This included the parent who taught Jessie how to climb up the down part of the slide when the teacher was not looking (because that’s what kids did, and Jess had trouble with timing), the one who made sure she had lunch duty in Jessie’s classroom so she could start games and make sure that Jessie was included, and the one who forgave the biting incident in junior kindergarten and invited Jessie to his son’s birthday party anyways. 

And when the principal changed and with him the supports for Jessie, it was the other parents of so-called typical children who were my allies and advocates as we did battle to remain at the school. These other parents were, and continue to be, my teachers. They keep me honest, they ground me, and when I so badly need it, they fill me with laughter. They remind me that we are none of us so special as not to belong to each other. And that is good. 

Retro Jessie: Stop Labeling, Start Enabling

Jessie at 14, with sister friends Alex (l) and Zoe (r)

My daughter Jessie is 14 years old. She loves french fries, short skirts, Hilary Duff movies, boys, writing, dancing, listening to books on tape and baseball. She dislikes all vegetables, cleaning her room, detentions and being forced to walk long distances because her mother thinks it would be healthy for her and the environment. She also has Down syndrome and has been variously labeled as having an intellectual disability, a developmental disability, and special needs. But this so-called “disability” is only one small part of who she is. She is not her diagnosis; her potential and her gifts cannot be defined by her Down syndrome or whatever label you might choose to attach to her. In fact, among friends and family, and in typical settings (including school), her label is irrelevant! What is relevant is her own unique combination of talents, skills, and learning styles that describe who she is, where she wants to go and what she has to offer her friends and community.  

Labels can be useful – but only when they actually convey information that is useful. “Diabetic” can be a useful label in certain situations. “Explodes on impact” is another useful label. But disability labels are rarely useful in the real world – they are too general and often promote limited, outdated and discriminatory responses to an individual.

When our daughter was a toddler and we were applying for Handicapped Children’s Benefits, the worker who came to assess our situation joyfully crowed “Downs syndrome! Oh I love down’s kids – they are so happy!” I was astounded, not so much by the gall, but by how off-the-mark that descriptor was. While our daughter certainly had many happy and joyful moments, come 4 o’clock (the witching hour) she transformed herself into a holy terror intent on communicating her displeasure with both the world and myself. Happy was not a word I would use to describe Jessie. Joyful, playful, persistent, determined, full of glee, mischievous – any one of those might apply, but seeing her as a “happy child” just because she had Down syndrome seemed to me, to take away the richness and strength of her personality and gifts. I was speechless, and quickly decided that was a good thing to be in this situation. We desperately needed any additional financial support we were entitled to, and if it meant biting my tongue and letting the label define our daughter for this stranger, then I was willing to do so.

But it made me think about just what our bottom line was and how far we were willing to go to promote and encourage Jessie and our community to see all children and people as individuals first. While the label “disabled” can be useful for access to services and information (like quick passes at Disney World, the chance to perform at the Disability Arts Festival in Toronto, tax benefits, school funding, and important research on learning and Down syndrome), it is rarely useful outside of that context. Our experience has been that the label limits people’s perceptions of our daughter’s unique gifts, talents, and potential, particularly in school settings. In those situation, it has been used to place very severe limits on her participation and educational achievement – and so we refuse to use the label and force the school to look at Jessie’s individual strengths, needs and gifts. While it has not always been a smooth ride, it has been both enlightening and empowering. And it has served Jessie well (the bottom line) in supporting her sense of self as a contributing, capable, and equal member of her school and neighbourhood community.

Each year we meet with the school team for an annual review of Jessie’s strengths, needs, and placement. Previous years she presented her strengths and needs and profiled her year, then left while the adults remained to battle it out. One of our discussions has always been the label. For both practical and philosophical reasons we have refused the Ministry definition of our daughter’s “disability,” finding it to be discriminatory and limiting.* We allow them to use the standard label, but sign a strongly worded disclaimer stating that we agree with the label for funding purposes, but strongly disagree with the description.

Our daughter just turned 14. In the spirit of “nothing about me without me,”  she was fully included in her IPRC (Identification, Placement and Review Committee) meeting this year. Jessie was adamant that she did not want the label “intellectual disability.” That’s not all of me, she said. “That doesn’t tell you who I am. If you have to give me a label it should be, and she paused for a moment as she thought, it should be… ‘Creative Jessie.’” 

What kind of schooling might our children experience if we listened and acted upon the voices of people like Norman Kunc (1994), a disability rights advocate who himself has cerebral palsy:

"I am not broken! I am not broken! I am a representative of the diversity of the human race!"

*Back in 2004, the label intellectual disability also came with a descriptor that included not being able to “profit” from placement in a regular class.