In Praise of Disabilities

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 Further, they often apply outdated parenting “concepts” that we know aren’t healthy for you, aren’t supported or recommended by the specialists we work with, and simply don’t work for you.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