During my time as a PABSS advocate, I have had the privilege
of meeting dozens upon dozens of parents of young people with disabilities.
They are and continue to be a professional inspiration, and certainly one of
the more formidable collections of people I’ve yet to meet. Parents of young people with disabilities are
a hardy bunch, hardworking and often of singular purpose. They give years of
their life to tackling all the challenges that come with disability, work
tirelessly to empower their children, and provide them with every support
imaginable. That dedication and active manifestation of love is a privilege to
see, and I would never wish to diminish its importance in the lives of young
people with disabilities. After all, one such parent’s dedication is the reason
I have the opportunity to even write this blog at all. It is because of my
gratitude to that unique group of parents that I feel compelled to comment on a
trend I’ve observed within the parental community which I believe to be rather
dangerous. It is all too common and unintentionally cruel, as it disregards the
dignity and right to agency all people with disabilities demand. And it is that
trend I’d like to explore today.
When I talk with parents, I invariable note that some will
use “We” in reference to their child’s achievements and activities. Johnny
joined the football team becomes “we became a member of the football team this
year”. Jill applying for colleges
becomes “we applied for colleges”. It is
I must say a particularly distasteful twist of language, and one which I
believe carries with it some unsettling insights into the parental perspective.
Before however I get into why I find that particular use of “we” so
distasteful. Particularly, I believe because it is so far removed from how my
own parents referred to me and my disability. The bellow is not directed at
every parent who has ever used “we” in reference to the life of their child
with a disability. The occasional use of such language is totally
understandable and probably unavoidable as a parent supports his or her child
as they deal with the challenges of adolescence. I write instead to the
habitual users, those parents who seem determined to tie their lives and their
sense of self to every accomplishment their child achieves. It is to those
parents I write the following and to the mother of a young woman I met some
time ago who described her daughter’s life entirely in a chorus of “We”.
Dear We-Mom,
“We” are not disabled. Decades of help, guidance, and love though essential to our success, does not give you leave to appropriate our lives and our experiences. I am disabled. Your daughter is disabled. She and I have lived, worked, and endured under the shadow of social prejudice and discrimination for the duration of our lives. As close as you may be to your daughter’s daily struggles, you are but on the periphery of what is a vast and often incredible difficult personal journey. Life with a disability is a complex thing, and one I continually fail to fully grasp though I have lived with it my entire life. Your love, and your work as inspiring and essential as it may be, gives you no way to know her experience beyond that of a loving mother’s empathy. No more then she could know the special heartbreak of seeing a daughter she loves subjected to pain and social isolation. Your struggles are each your own, intertwined perspectives of human experience. Do you find the disabled experience so simple, so without complexity or nuance that you would effortlessly adopt it? It is not yours. You have no claim to it. You have not earned it any more than your daughter earned the right to tell you the nature of motherhood and the special terror that comes with watching your children fall or fail. What is left then is to speak as you would of any of your children, taking pride in their accomplishments, holding for them an expectation of success. As you have observed her struggles, her failures and fundamental triumphs so much you recognize she has long since earned the right to hold her life in her own hands.
When your son proposes to his longtime girlfriend, do you
tell your friends “we” are getting married? When your daughter breaks her ankle
playing soccer and has it repaired do you inform friends and family that “we” need
surgery? If not, then you must ask yourself why. Why do experiences and lives
of your other children stand apart, when your daughters must be by necessity
extensions of your own life? If the answer is ego, ask yourself if you hold
your own sense of self above that of the daughter you have so diligently
raised. If it is fear, then realize there is a dignity and unique worth in
personal failure and your daughter deserves both in equal measure. Either way,
I ask you to please take note of the impact your language and your attitudes
inform your daughter’s sense of who she is to be.
You may feel an impulse to mark down such verbal
distinctions as largely irrelevant in the face of the vast challenges your
daughter faces. Resist such a notion. There is no higher mark, no greater goal
for a young person with a disability then to feel fully realized, to feel human
when faced with the inhumanity of neglect and mistreatment. It is that all
important feeling of pride and self-assuredness you undermine every time your
language attempts to conflate her life and wants with your own.
As a young person with a disability, your daughter is
subject to a barrage of messages telling her she is worth less than her peers, that
her dreams and person are not needed in this world. I’ve experience such a
barrage of negative messages for much of my life, and the only remedy I’ve
found is to live a life of my own choosing and my own doing. Though I may get
supports, though I may lean heavily on family and friends in times of need, I
can take an incredible satisfaction from knowing for better or worse my life is
my own. To use “We” in your language and in your thinking is to mute that all
too necessary joy. And so I would ask you this:
Appreciate your daughters drive and accomplishments, as you are a key element of support that made those accomplishments possible.
Acknowledge her unique challenges and ambitions, and allow her the special kind of growth that comes with failure.
Realize that though you must and should take pride in all that you do as her mother, that your daughter deserves to discover a pride all her own.
Refer to of her life as you would her brothers and sisters, and allow her magnificent life to speak for itself.
To that, I believe, is to do justice to all that you have
given her.
