Dr. Rader went on to observe that we “do a poor job of providing opportunities for [people with intellectual and developmental disabilities] to make friends, not to mention opportunities for them to walk into bars. The richness of life has its roots in relationships, friendships and hanging out with folks who know us, forgive us, tease us, support us, and root for us.”
You got that right, Doc!
Forgetting about everything else about which we worry in this field, arguably the greatest obstacle to full engagement in and as part of community for people with intellectual and/or developmental disabilities (IDD) is they rarely have friends – never mind acquaintances, colleagues, co-workers, fellow students, the list is endless – with whom to contemplate going anywhere and doing anything.
Oh, and a bar? A bar??! Please!
Whether it was the moralistic, “eternal child” arguments of our not-terribly-distant past (which resulted in people with IDD being considered asexual teetotalers), or our clinical “contraindication” arguments of our more recent past (gosh, Jimmy can’t possibly have a beer, lest it mix with the elephant drugs we have him on), or the persistent attitudinal barriers that would have the whole of the bar stop dead, turn and stare at the dude with Down syndrome who’s turned up to play pool (“Is he allowed in here??!”) and have a brew.
Where to begin to unwind this terrible dilemma? I have thoughts, of course – we all do. But what is the epidemiology of loneliness among people with IDD? Why, more than 45 years after passage of what we know today as the Individuals with Disabilities Act, which brought kids with disabilities into public schools to be among their peers with and without IDD, are lifelong friendships so lacking? Why, after hundreds of thousands of people with IDD have been discharged from far-away, out-of-sight-out-of-mind institutions and into their home communities, do so few people with IDD enjoy the richness of friendship? In the USA, where hundreds of billions of dollars have been spent in supporting Americans with IDD over decades, finding people with IDD who have meaningful friendships – not with people paid to support them – is persistently like finding a needle in a haystack.
“On Walking into a Bar with a Guy Named Dunbar” got me thinking about Robert Putnam’s Bowling Alone, an admittedly dated (I highly recommend it nevertheless) but provocative examination of social capital. Putnam argues that fewer and fewer Americans are joining things like PTA or synagogues, mosques and churches, or bowling leagues. We are, in essence, disengaging from the ecosystems that connect us, through which we make and sustain friendships. This is not a review of Bowling Alone. But, its premise is worth considering: our relationships, our friendships, are building blocks of social capital, which in turn enables society to function optimally.
How do we contemplate the centrality of friendships and relationships as essential to an optimally functioning society against the stark realities that people with disabilities tend not to enjoy friendships of the same quality or in the same number of people without disabilities? And maybe way more important, what are we going to do about it?
I met my wife, my substantially better half of nearly 25 years, at work. Did you know that 70% to 80% of people with intellectual and developmental disabilities in the United States are unemployed? For 2020, the US Bureau of Labor Statistics reported that only 17.9% of people with disabilities were employed. Yes, you read that right.
I met four of my best friends on the planet more than 30 years ago in college. Did you know that for the school year 2015-2016, only 19.4% of undergraduate students in post-secondary education were students with disabilities? Worse still, only 11.9% of graduate students that same year were students with disabilities. (Data are from the National Center for Education Statistics.)
I am Jewish, and regularly attend Shabbat services and participate in my synagogue’s activities. I have friends from and who are part of the Jewish community. Did you know that while actual participation is hard to measure, studies suggest faith community participation is limited for people with disabilities? Did you also know that many congregations, even in 2021, haven’t meaningfully addressed the need to deeply welcome people with disabilities into their communities?
Three places that are central to how I’ve developed virtually all of my most meaningful relationships. Three places from which people with disabilities continue to face stubborn, persistent barriers to full participation. So, what are we gonna do about it?
It's one-dimensional thinking, but let’s try some easy things:
- Let’s stop finding jobs for people with IDD. Let’s instead ask younger people with IDD, while they’re still in secondary school, what they want to be when they grow up, and then walk alongside them in their pursuit of an actual career. The former is where a job is simply a box to be ticked, a transaction. And, it’s not working. Since 2009, the aggregated growth in number of people with IDD in integrated employment is a not-so-whopping 6.6%.
- While the number of people with IDD who are formally enrolling in post-secondary college and university-based options is growing, the actual number barely registers. Zhang and colleagues put it bluntly: “individuals with intellectual and developmental disabilities as a whole have not been fully included in the college and career readiness movement nationally.”1 It’s not for lack of options – on Think College (great resource at https://thinkcollege.net), there are more than 200 post-secondary education options for people with intellectual disability and autism. Of those, more than 100 are four-year programs, more than 90 offer housing, and 99 offer financial aid.
- According to the Collaborative on Faith & Disabilities, 84% of people with disabilities say their faith is important to them. Contrast this with only 10% of faith communities that do any congregation- or community-wide disability awareness. A big part of creating a warm, inviting and welcoming faith community is attitudinal. Yes, architectural accessibility matters and yes, it costs money. But, liturgy can be modified to facilitate active engagement of all people for free. Asking people with IDD how they’d like to be welcomed into faith communities, and then taking their responses seriously as calls to action takes only time and a commitment to change. And starting a dialogue with your temple, mosque, synagogue or church spiritual leaders and boards of directors is a first step that anyone can and should take.
One more thing. For those of you for whom a trip to the bar or local pub is not unusual, join me in hoping for the day when the guy with Down syndrome walks through the door and welcoming him to a game or two of pool. Maybe even buy him a pint. Have a laugh, make a friend. Not only will you add a friend to your world, you’ll become one in his.
ABOUT THE AUTHOR:
David Ervin, BSc, MA, FAAIDD is CEO of Jewish Foundation for Group Homes, a nonprofit supporting people with intellectual and developmental disabilities (IDD) in Maryland and Virginia. With more than 30 years in the field, David has extensive professional experience working in and/or consulting to organizations and governments in the US and abroad. He is a published author and speaks internationally on health and wellness and healthcare for people with IDD and other areas of expertise.
References
1. Zhang, D., Grenwelge, C. and Petcu, S. (2018). Preparing individuals with disabilities for inclusive
employment through the postsecondary access and training in human services (PATHS) program. Inclusion, 6(3), 224–233. https://doi.org/10.1352/2326-6988-6.3.224
Read the article here.