Dear Declan:
Did I surprise you with that title? I bet I did. I’ll tell you a secret: I
surprised myself, too. When those words popped into my head recently, I
actually stopped for a moment and asked myself aloud, “What?!” Surely one can’t
think of any disability as worthy of praise… can they?
As I’ve pondered this idea more and more, and mulled over various viewpoints
surrounding the language used by our “community,” I’m convinced “disability” is
an important word, and is one we should use frequently and freely. Please let
me unpack my thoughts on this topic a bit more for you…
Words are important. They matter. They can make a
positive impact by supporting and uplifting, or be incredibly hurtful by demeaning
and diminishing. Some people will say words don’t
really matter. Others will say “disabilities” is a limiting term, and
shouldn’t be used at all. Still others will joke that your father and I are
“snowflakes” for advocating for language that is more compassionate, inclusive,
and respectful. I disagree on all counts.
I’ve earned my stripes as a “disability parent” and have thickened my skin
considerably to insensitive comments over the last (almost) twelve years of
navigating this previously-unknown world. Don’t get me wrong -- it still hurts
when someone makes a judgment about you, or comments on our “lack of discipline”
because of something you’ve done when you’re dysregulated. It’s especially
painful when those words come from people close to us – those who we thought would be our support network.
In those situations, I try to remind myself the people making the judgments have
no clue what our journey has looked
like thus far. They aren’t plugged into our lives, so they are judging us based
on their limited understanding of our situation, or are making assumptions based
on what they imagine our life looks like, or what they've heard from someone else. Some don’t even realize you have
legitimate medical disabilities, and simply write off your behavior to lack of
boundaries or consequences. Further, they often apply outdated parenting “concepts”
that we know aren’t healthy for you, aren’t supported or recommended by the
specialists we work with, and simply don’t work for you.
I remind myself I know what it takes to handle the
day-to-day challenges that come with being a caregiver for you – disabilities and
all -- and how important it is to advocate for you until you can do so for
yourself. That’s what keeps the fire burning in my belly to make sure you are
treated with dignity and respect, and why I will advocate for you until the day
I take my last breath.
Declan, I am certain there is a reason – many, perhaps
-- you landed with us, and not another family. I used to wonder how in the
world God thought it was a good idea to entrust your father and me with such a
huge responsibility. But as I watch you grow, and marvel at the wonderful young
man you are becoming, I understand more and more every day why He chose to
bless us with your presence.
I doubt some of the folks who would carelessly lob hurtful
words or judgments at you/us have any inkling of what this life takes, or have
the fortitude to handle it. That’s okay; I wouldn’t want them to handle it. You
deserve far better than that, and it’s their loss to not know you the way we do.
I believe God knew we would do everything we could to ensure you have the best
life possible, and that we would love and nurture you through all of the
challenges. That includes how we hold people accountable for how they treat you,
and the words they use when talking to -- and about -- you. It may make them
uncomfortable when we hold for respectful boundaries, but I’m not going to
accept that as my problem; it’s theirs to figure out (or not). When I know in
my heart that it’s the right thing to do, I will continue to do so. You deserve
nothing less.
The good news is that there are plenty of people out there who are listening, and who do care. I share these pieces of our life
for them (and for us as well) in the hope we all can learn how to be more
compassionate to those who are different. The blessing that continues to appear
from this level of vulnerability is that new people are plugging into our Tribe
all the time.
It’s such an incredible feeling to meet someone else
who says, “You, too? Oh, man – I get
it.” Even if the diagnoses and details aren’t the same, there is solidarity of
spirit in the disability community that is empowering and relieving. Honestly, I
don’t know if I can do justice in explaining the connection. There is just something
incredibly relieving to me when I hear someone else resonate a level of
understanding about our life. Just the other night, I found myself in a group
conversation with people who are fairly new to me, and I cautiously shared
about your disabilities. Suddenly, a handful of others were chiming in with their
own situations, and a number of us found ourselves crying happy tears that we
had found more of “our” people.
So why this praise for “disabilities” as a term? Why
advocate to use it freely in our conversations out and about in the community? Why
talk about disability rights, or disability needs? Mainly because I’ve
found -- time and again -- that people will diminish your legitimate need for
resources, inclusion, and support if we use a softer term like “special needs”
instead.
Unfortunately when I used “special needs” in past conversations,
the other person – from family members to school personnel – inevitably would
say, “Well, all kids have special
needs.” Ugh. No. Not all kids have
special needs, and the distinction is important.
Yes, all kids have needs, and I understand all kids are different. Some
children will have challenges with things that come easily for others. Some
will respond really well to incentives or consequences, while others will
barely blink at their presence. But please – please -- don’t suggest that a
tough semester of math with a difficult teacher is in the same “special needs”
category as navigating daily life with a neurological impairment. Doing so diminishes
the challenges that come with actual disabilities, and is terribly dismissive
to those who are living life with them. (And, if I’m being completely honest,
it will earn a knowing eye roll exchanged between Hubby and me when you’re not
looking. What is it they say – #sorrynotsorry? Yep… that.)
Merriam-Webster’s definition of “disability” is “a physical, mental, cognitive,
or developmental condition that impairs, interferes with, or limits a person's
ability to engage in certain tasks or actions or participate in typical daily
activities and interactions.”
I think that definition is solid, though I would add that a disability doesn’t
necessarily mean someone is automatically unable to engage in a task at all. Instead, it may mean that they
need different accommodations -- a smaller environment, more time, physical gear,
fewer distractions, or any number of supports – in order to participate.
A disability also doesn’t mean a person is “less than” anyone else; it simply
means they may need to navigate life differently. Dear Declan, if you remember
nothing else from this letter, I pray you will remember that. You are so much more than the sum of the
challenges your disabilities present. Don’t ever let anyone try to convince you
otherwise. You never need to apologize for who you are, or play small to
accommodate someone’s insecurities, judgments, or willful ignorance.
We know you to be wonderfully bright, and incredibly funny.
You’re thoughtful, curious, creative, and quirky. And, yes, sometimes your
behavior is challenging. (I know you know this, because we have frequent conversations
about it, as well as how that’s all some people can see in you.) But you’re
also an incredibly compassionate young man, and that’s a joy to for us to
experience.
Just yesterday when you found me crying in what I thought was a private moment,
you asked if you could offer me comfort. That meant the world to me. You
recognized I was hurting, and had the softness in your heart to ask if you could
help. That, my boy, is an incredible gift. I pray you are able to keep that spirit
of gentleness as you mature.
I will never know for certain if your disabilities are
what have shaped your level of care for others, or if you would have that level
of compassion anyway -- but I’m betting they at least play a part. Your continued
efforts to understand and navigate a world that isn’t designed for the brain
you have, while treating others with love and care, make me so proud. I admire
your spirit and tenacity (most days, that is) and will continue to use the term “disabilities”
when I talk about you. The world deserves to know you as you are, and I will praise the
package that comes with your presence, disabilities and all.
Love you, big much!
XO,
Mom
