Vanier, L’Arche, Sexual Abuse, and Intellectual Disability

On February 22, 2020 L’Arche International released a summary of findings of an independent investigation that identified that Jean Vanier, venerated founder and spiritual leader of L’Arche, had in all probability engaged in non-consensual and coercive sexual activity with six women. In short, he was a serial sexual abuser.

I live and work in the disability and theology community and to say that the people in my world are struggling to process this information is an understatement. Overnight their hero fell from his lofty perch and what he is, and how he will be remembered, remains undecided.

My relationship with Vanier has always been a lot more nuanced and complicated that that of my peers. As a result my views about Vanier and his work have often been at odds with my broader community. I have never seen the man as a saint, and as the mother of a child with significant challenges I often struggled with the manner in which he discussed people with disabilities. I often took exception to his use of stigmatizing language and ideas about people with intellectual disabilities, particularly as a tool to explore his own, and our collective, humanity and faith. In my view, Vanier often fell victim to essentializing and objectifying people with disabilities, and in doing so he paradoxically dehumanized people in order to explore his own humanity.

The fallout of the news has been significant. Many are now talking about how to share this news about their hero and beloved friend with people with disabilities. What worries me is that at the moment the conversation continues to be about how to reconcile a venerated saint amid a sexual abuse scandal. While that is an important conversation since our friends with IDs will also be struggling to integrate this news alongside their memories of a beloved friend, I am worried that the more pressing conversation about sexual abuse, power, voice, and disability will be eclipsed by the grief many are feeling about their hero’s fall from grace.

The Summary Report released by L’Arche International identified that Vanier “on a balance of probabilities” (p. 4) sexually abused six women. None of these women lived with intellectual disabilities. However the report was also clear that the allegations of abuse were investigated on behalf of women who had voluntarily come forward to voice their stories. “This number does not presume that there were not other cases, but takes into account spontaneously received testimony” (p. 5). The summary of findings does not identify that a more fulsome review of Vanier’s relationships with women (or men), including those with IDs, was undertaken. That worries me.

People with intellectual disabilities often struggle to have their stories heard. Indeed many cannot tell their stories at all. As is often the case for vulnerable people, their stories are colonized and subsequently told by people with greater power, often to serve the needs of the privileged. In my opinion Vanier did this in his work exploring faith and humanity. However, this also means that people with IDs may not have the opportunity, or ability, to tell a story of abuse. Conversations about sexual abuse with people who live with IDs demand skillful and sensitive questioning at the hands of highly trained professionals. The summary of findings released by L’Arche does not share whether these conversations have happened with their most vulnerable population.

Conversations about abuse are further complicated by the fact people with disabilities, including people with IDs, are generally portrayed as childlike, innocent, and correspondingly, asexual. As a result, their sexuality and ability to engage in broadly defined sexual behaviours and practices often remains poorly discussed and explored. While many who live with IDs will never have the ability to consent to a sexual relationship, some are able to consent to certain forms of affection within specific boundaries, such as kissing, cuddling, and hand-holding, with a self-identified partner. Group homes, rather than discussing such issues in a healthy manner, often view sexuality among people with IDs as taboo. This means that often all conversations about sex, including conversations of abuse, are silenced by people in positions of power.

I am heartbroken that six women have suffered. I am grateful for their courage in allowing their stories to be shared. But I worry that the collective response, at least the one I have witnessed thus far, has continued to be about how all of us, people who enjoy positions of power and privilege, will cope with the loss of a beloved hero and role model. We must get beyond our own sense of loss to remember that people who were vulnerable were abused by a man who intentionally chose to live amid our most vulnerable citizens. This man used their stories for his own philosophical and theological edification rather than creating space for his friends with IDs to tell their own stories. I am not grief-stricken, I am angry, alarmed, and worried. And while I have no desire for this tragedy to become a witch hunt, it is imperative that L’Arche fully and transparently explore the nature of Vanier’s relationships with all members of his community including those with disabilities, and share the results. This tragedy must be first and foremost about protecting victims and vulnerable people, not about processing our feelings about the loss of a saint.

Our capacity assessment journey.

In any situation where an adult is unable to make decisions about their personal care, or property and finances, a formal assessment must be completed by a trained assessor to determine capacity. In cases when an adult is incapable an alternate decision maker must be appointed by the courts. So in essence, as Matthew’s mother and primary caregiver, I need to apply to the courts to be allowed to continue to care for my child with profound disabilities. The fact that there is no one else to care for my child is an ironic twist to the narrative.

I totally get why capacity assessments MUST be completed, and why they matter. The ability to make decisions about care and finances are very individual and highly nuanced. Unlike the thinking of the past, capacity is not clearly linked to diagnoses or age. Just because some has, say, Down sydrome, does not mean they are incapable. It is necessary for trained assessors to ensure that only people who are truly incapable have alternate decision makers acting on their behalf.

Capacity assessments are often completed in situations of progressive illnesses that impact cognitive function, such as dementia. They are also necessary when an adult has a disability or mental health challenge that intermittently, or chronically, challenges their ability to effectively manage their finances. These situations are particularly challenging because there may be stretches of time that an individual CAN manage their finances, but other times when the person is incapable and requires support for their own protection. In these situations capacity assessments are crucial, and often fraught with challenge, because denying an adult the ability to manage their personal care or property is a big deal.

And then there are situations like ours. Matthew is incapable of self-direction, and always has been. Despite years of effort, Matthew does not have basic communication skills and cannot share with people in his world his wishes or desires. That means that for the last twenty years I have been, and for the rest of Matthew’s life I am, his primary decision maker and most important advocate. Which means that it can feel pretty demeaning and demoralizing to spend considerable time, and thousands of dollars, to complete the process to be allowed the right to continue to care for my son. Not only do I need to convince the courts that I am an appropriate caregiver, the process is exclusively deficit-based. Like most processes in the medical and legal worlds, the entire process is designed to emphasize all that my son cannot do, rather than celebrating his gifts and the life we have created. It is difficult not to be dragged back into the grief and loss of those early years when I was coming to terms with Matthew’s extensive medical issues and disabilities.

The former health care professional, and the current academic and strident disability rights activist, completely understands why this process is necessary. My son is vulnerable and I want him protected. As well, there are parents who will enhance their child’s deficits to remain in control of their child’s life and finances. These parents are few and far between, but these parents exist and adult children with disabilities must be protected.

But the caregiving mother in me who has spent twenty years navigating a patriarchal medical and social support system that undermines maternal knowledge and efforts in both explicit and implicit ways, is angry and frustrated. I am tired of feeling constantly evaluated as a mother and caregiver, particularly by people who live and work in sterile offices disconnected from caregiving as a whole. I am aware that my extensive engagement with the legal system – spending months listening to lawyers clinically dissect my life, my body, my decisions, and my child’s body, to support their own particular, self-serving arguments – has translated to these situations being both stressful and deeply triggering.

To add insult to injury, because we have been delayed in completing the process we are living with the threat of the having Matthew’s financial support discontinued until the process is completed. Because Matthew’s care and maintenance is entirely privately funded by a medical malpractice award, this would be nothing short of catastrophic. Matthew receives no publicly financed in-home or social supports. None. His award funds everything – from medicines, to feeding tube and incontinence supplies, as well as nurses and caregivers. To lose those funds would bring all of Matthew’s care to a screeching halt, and threaten his well-being in ways I cannot fathom.

I suppose you could argue that I have been an irresponsible mother. And in my darker moments I heap blame upon myself. It is so easy. Everyone else does. I should have completed the process well in advance of Matthew’s 18th birthday. The powers that be reminded me that there was a sentence in a letter they handed me seven years ago advising me about guardianship at age 18. But seven years ago I wasn’t sure my child would live to 18 – he was so very medically complicated and we were averaging weekly trips to the emergency room. I was spending my time contemplating end-of-life conversations. My son’s financial management at age 18 was the furthest thing from my mind. I was hanging on by my fingernails as a caregiver, and that one sentence got lost in the chaos of the day. Our financial managers protected themselves with that one sentence. It feels like no one cared about truly protecting Matthew, and by extension, me. The irony hurts.

Many parents of adult children do not complete the process for power of attorney and guardianship, and all is well. These are the parents in my community that I had talked to as Matthew’s 18th birthday approached, having completely forgotten about that letter. And honestly, for parents of kids like Matthew where 18 is just a number, adulthood is no different in terms of caregiving than childhood. That’s what it felt like to me.

But, as I have been reminded by the settlement’s financial advisors, most parents do not manage their child’s care with funds from a malpractice award. One of my biggest critiques about the medical malpractice journey, and I have many, is that I never received support or mentorship while navigating the process, nor during the years that followed. Upon the lawsuit’s conclusion, I was handed a large financial award on behalf of my son and basically told to “be ethical”. It does not seem to have occurred to our structured settlement providers, or financial managers, that perhaps they could have offered support and mentorship when my child approached his 18th birthday, and all this stress could have been minimized. To be fair, they haven’t terminated our son’s finances, only reminded me monthly that the possibility looms. Sometimes it feels that the world prefers to stand in judgment rather than offer support.

We have PLANS!

When I learned a small bungalow was for sale around the corner from our home I immediately assumed it wouldn’t work for my son’s wheelchair. Most homes don’t unless they’ve been custom built. But, given the home’s location, it seemed appropriate to at least give it a look-see. So imagine my surprise when I walked through the front door to find an open concept home that was, with some tweaking, amenable to wheelchair users.

At first, the plan was that we would do only basic renovations to the home and use it primarily as a weekend respite facility for our boys. Our thinking was that this would allow “trial period” to decide whether managing a community based home for our son and a friend was something we could sustain for the long haul. If it didn’t work the home could easily be re-sold.

The past month has been a blur, but once we started spending some time in the home with a team of architects it became fairly clear that a whole home renovation made more sense. So we’ve decided to take a deep breath and renovate the entire home. For better or worse we’re jumping in with both feet. We’ll be widening doorways throughout, installing an elevator, and finishing the basement. In the basement we will have a suite for the house assistant, a sensory room for the boys, and a huge wheelchair accessible bathroom with a wheel-in shower. I’ll share pictures when it’s all done. While I am more than a little freaked out, I believe with every fibre of my being that creating this home is the best thing for my boy.

For logistical reasons the renovations won’t begin until early 2020. So for the short-term we have made arrangements for some Grebelites (those who live near me will understand what that means) to live in the home. For insurance purposes we need to have the home occupied, and having some students occupy the home for the fall term dealt with that concern. Instead of rent, the boys will be providing occupancy as well as basic home maintenance. And as part of their “rent” we have asked the boys to join us for weekly dinners to get to know Matthew and Buddy. Because community is important for all!!!

My confession.

I wasn’t always on board with this co-housing idea. Two years ago, almost to the day, we entered a shared care model with a group home. We had been exploring co-housing with a few families in our community, but for many reasons it wasn’t the right time. Feeling we had few opportunities for an adult with Matthew’s complex needs, we entered a relationship with a local group home for children and adults with severe disabilities.

At the time I thought that this was the right way to proceed. Honestly, I thought it was the only way to proceed. My feelings were probably clouded by the fact that Matthew had just aged out of pediatric care and I was feeling burned out, hopeless, and a little desperate. I knew many families in my community who were struggling with the same challenge – how to find an appropriate and caring home for their loved-one with disabilities – and I wanted an answer for our family. I also knew that there were few good answers available in Ontario and that things were getting worse, not better. I was convinced I could work with a local group home and create a unique, cutting-edge approach to shared care for adults with disabilities. I figured we would gradually transition Matthew to full-time living at this home.

And we did. Make it work that is. At least to a point.

To be fair to this facility they did everything right. They worked with me. They listened to what I wanted. They allowed me to place my own workers in their facility so Matthew could have 1:1 care. The leadership team was excellent and did everything right. But in the end they were an institution and would always be an institution. And they were far away from our family home. That last part eventually became the deal breaker.

Rather than gradually transitioning Matthew TO this facility, over time I found myself organizing our care schedule so that Matthew spent less and less time at the home. Initially, Matthew spent time at the facility during the week, and spent weekends with us. By our second year exploring this shared-care model Matthew was only spending weekends at the home, and I no longer thought full-time placement at this facility was what I wanted for Matthew.

Which placed me firmly back at square one. The waiting list for any kind of long-term housing for an adult with disabilities is years long. And that is for any kind of housing. It may not be good quality housing. And here I had just said no to a good home with good people. It was hard not to panic and think I was making a mistake when I sent the email officially terminating Matthew’s bed at this home.

I also knew that I couldn’t sustain Matthew’s long-term care independently.

Truth be told, I don’t want to. I have been down that path and know how bad the burnout can be. I know that I am not the best caregiver, mother, partner, friend, or human being when I am that burned out. Trust me, ask my husband. That man is a saint for putting up with me. Nope. Returning Matthew to my full-time care would NOT a good long-term plan. Plus, it creates lots of complications if I can’t provide the care for any number of reasons – like that if that Mack truck hits me tomorrow.

I also know that it isn’t in Matthew’s best interests to concentrate his care in our home. Ultimately Matthew needs his own home, and a team of caregivers that aren’t his middle-aged parents who are beginning to talk about life with an empty nest. Heck, we’re looking forward to that empty nest. .

I also know that I need to begin to establish whatever this plan might be before a crisis hits. Too many families scramble to come up with adequate housing following something like an illness, death, divorce, or other family tragedy. Planning during a crisis often yields poor results.

Yet two years ago I had walked away from talks about co-housing because I honestly believed my son’s care was too complex to sustain in an independent, family-run community-based home. I truly believed we needed the infrastructure of a home with on-site nursing, and that anything different would not be in his best interest. The idea that we could create something that would actually WORK seemed daunting, even impossible. If I am being painfully honest, I didn’t have faith in myself, or my community, to make something more creative work.

I suppose I had to try the other option before I was ready to take the risk of creating our own home. I am glad I did. I learned a lot about what I wanted for Matthew. I learned that Matthew’s best life had little to do with things like policies, infrastructure and nursing care plans, and more to do with community and family. I discovered that while credentials are important, love and commitment to my son and his flourishing will always be the ultimate qualification. I also learned that I need to have a whole lot more faith in my own abilities and creativity, as well as my community’s. The support and encouragement I have received since sharing that we are exploring this new path has been overwhelming and unfailingly encouraging.

There’s nothing kinky about a bare trust.

When we signed the documents to purchase Littlel’arche (get it, the home is a Little L’Arche) my husband and I simply wrote our names on the offer of sale, and then added ‘in trust’ for our son. For us, that demonstrated that our child was the true owner of the home even though we were making the offer. Our son, after all, couldn’t speak, or sign the papers. Our names were only on the papers for financial reasons – namely that we thought a bank wasn’t about to give an incapable adult a mortgage,

It turns out we were wrong in lots of ways. Something tells me this is only the beginning, and that I am about to make a whole lot of mistakes as we embark on this journey. Two weeks ago, when we met with lawyers to take possession of the boys’ home, our lawyers informed us that homes are no longer owned ‘in trust’. And, as it turned out, a bank would give an incapable adult a mortgage should s/he have the money needed – but that’s another post.

It turns out what we needed was a bare trust. A bare trust establishes that a beneficial owner, our son in this case, has absolute right to all the capital and income generated from an asset. So while my partner and I legally own the boys’ home, Matthew is the sole beneficial owner. In essence he owns the home, even though legally he doesn’t. I know, it’s a paradox!

The most important part of a bare trust, at least for me as Matthew’s mother, is that if my spouse and I get hit by that Mack truck tomorrow, the house does not become part of our estate. Our heirs cannot liquidate the asset and render Matthew and Buddy homeless. Not that they ever would – I would rise from the grave and give them the biggest tongue lashing of their lives. The home is considered our son’s property even though we’re on title.

As Matthew’s trustee I am responsible for managing the home, but I can derive no financial advantage from it. I have also been led to believe that by structuring home ownership in this way we’ve ensured that Matthew avoids capital gains taxes, or other inheritance taxes, should we as the legal owners of the property, pass away before him.

In many ways our situation was fairly straight forward, because while the home was purchased with the intent of Matthew and Buddy living together in Littlel’arche, Matthew is the sole-(beneficial) owner of the property. It gets more complicated if multiple families purchase a home together for the purposes of their children – and expert legal advice is essential. Yes, you will need to pay those exorbitant legal fees. My husband is a lawyer and he had no idea how to structure this purchase.

For the moment the plan is that Buddy will pay rent to Matthew. And my guess is that once that happens it will open up all sorts of new financial learning for me since I will add ‘landlord’ to the many other roles I play in Matthew’s life. ‘Cuz I didn’t already have enough on my plate.

The upshot is that as of July 17, 2019, my 20-year old son, owns an adorable two-bedroom bungalow around the corner from his folks.

What have we done?

Like many parents of adult children living with disabilities my husband and I lose a lot of sleep worrying about what will happen to our child if we were killed in a car crash. Truthfully, I probably toss and turn more at night than my husband. His ubiquitious snoring proves that fact. And it isn’t a pleasant thought – thinking about my son’s life if I were dead. But, as a mother of a child with complex disabilities I know that I need to think about what might happen if a crisis hit and I were unable to manage my son’s care. All too often, when bad things happen to their parents and primary caregivers, adults with disabilities end up in living arrangements their parents wouldn’t want. Honestly they end up living in places none of us would want.

My husband and I have always known we couldn’t sustain Matthew’s care forever. As a result, we have spent the last two years exploring a shared care model with a group home. The people there were great, but we knew it wasn’t what we wanted. A few months ago I was sitting with a friend drinking coffee in my kitchen and shared that in a perfect world our kids could live together in a house around the corner.

I am not making this up. I swear. Three days later a wheelchair friendly bungalow AROUND THE CORNER was listed for sale. It needs work to make it suitable for Matthew and his friend. But it has great potential. So my husband and I bought it. The last two months have been a whirlwind and had I stopped to think through all the barriers and challenges we would be facing I would have easily talked myself out of the purchase.

We honestly don’t know what we’re doing. Only that we want to create something wonderful for our son. Something that could exist even if I were hit by the proverbial Mack truck tomorrow. Families often talk about doing something like this for their adult children with disabilities, but there remain few parent-run, community-based homes for adults with disabilities. I can’t decide if I am terrified, foolish, or privileged to be part of something exciting and new. Hang around and find out.