13 December 2017

Intellectual Disabilities – Are We Missing Something?

raIt is said that stories are the fabric of our lives and the way to come to know another person is to ask the questions that unlock their story. For most of us the questions change and develop with the passing of time and the unfolding of our lives. What interests us in a new encounter with another person at a particular stage of their or our experience differs from what might capture our attention at a later point. For my daughter Rebecca though, only one question has dominated the attempt of almost every individual to get to know her. Rebecca has complex intellectual and physical disabilities and has been the subject of countless medical interventions since her first seizure occurred at the age of three weeks – she is now 27 years old. As the years have passed and each new “professional” or potential friend has entered her world, this one question has shaped that encounter. The question: “Can she speak?”

Rebecca does not speak with words. She never has. Verbal language has seemingly little relevance to her life. What of it she can understand, we cannot know. She may understand everything we say or nothing or something in between. There is no way of telling. Yet, in answer to the question, “Can she speak?” those who know and love Rebecca unwaveringly reply, “Not with words, no… but without words, definitely.” This fact requires no guesswork or truth-stretching on our part for her voice resonates loud and clear through each day of our lives. Rebecca speaks to us of many things but most of all she speaks to us of God.

“In radical contrast to secular strategies, His choice is of the foolish, the weak, the lowly, the despised and things that are not, to confound the things that are.”

The Bible is littered with instances of God speaking through unlikely messengers. From Moses with his stammer to the talking donkey in the story of God’s challenge to Balaam; from Isaiah’s striking statement which Paul reiterates in 1 Corinthians 14, “Very well, then, with foreign lips and strange tongues God will speak to this people” to the messages that came in dreams and visions from the time of Jacob in Genesis to John in Revelation, it is clear that God, in His wisdom, can and does choose whomever and whatever He wants, to communicate the things He wants us to know.

And then there are the other biblical texts which reveal something of God’s unusual yet purposeful choices of those whom He entrusts to make a major impact in the world. In radical contrast to secular strategies, His choice is of the foolish, the weak, the lowly, the despised and things that are not, to confound the things that are (1 Cor. 1:27-30). The history of the treatment of persons with intellectual disabilities makes it easy to draw parallels between their experiences and those of whom Paul is writing here. They might be easily recognisable as those who have been and continue to be, often despised, lowly, considered foolish. It is not difficult to relate them to “those things that are not” since many of them would not exist, had they been subjected to the consequences of genetic engineering and pre-natal testing with a view to abortion, in societies which routinely question the “wisdom” of allowing them to survive. Sarah Williams, an Oxford Professor, recounts the opinion expressed by a physician involved in her care as an expectant mother whose child was diagnosed with severe and lifethreatening disabilities: “To fail to abort in the case of proven foetal abnormality is morally wrong because in so doing one is deliberately and wilfully choosing to bring avoidable suffering into the world. It becomes an ethical imperative to abort in the case of suboptimal life.” This was also our experience when, following an initial but incorrect diagnosis of Rebecca’s condition as a genetic abnormality which had a one in four chance of re-occurring, we were told by an eminent geneticist that, should any future child of ours prove to have the same condition, he would “get rid of it for us.”

Yet I wonder whether we might see something of these people in Jesus’ words in Matthew 25 by which He enigmatically identifies Himself with those who might be considered “the least of His brothers and sisters.” Take a look at verse 45: “I tell you the truth, whatever you did not do for the least of these, you did not do for me.” Biblical scholars have been grappling with this passage for centuries but no-one yet has been able to explain away the implications of what Jesus is saying – that He utterly aligns Himself with those who are considered “the least”- the needy, the hungry, the stranger, the prisoner; in our terms, those who are socially and religiously marginalised – a still all-too-common experience of people with profound intellectual disabilities. And so there are grounds to believe that as we spend time with such people, we do not merely meet God walking beside them; rather in the meeting of them we find ourselves spending time with God.

So what do we (and what might the Church) hear these people say? What is Rebecca’s message to those who know her and to the Church at large? Primarily her message consists of what it is to be authentically human and highlights how subtly our secular culture has infiltrated and pervaded the thinking of the Church with its falsehoods about what constitutes a true experience of being human – a culture which prioritises ‘being normal’; which equates health, prosperity, autonomy, self-sufficiency, economic productiveness, intellectual achievement, freedom, and power with what is good.

“Jesus experienced vulnerability, fragility and weakness as part of the perfect human condition.“

Of course, as those whose physical body and/or behaviour is assumed to make them incapable of making such a contribution to society, people with intellectual disabilities present a powerful challenge to the idea, often put forward by the Christian community that any deviation from the normal or the healthy is understood as part of a corrupted creation.

The true biblical perspective argues that to be human is to be loved into being in the image of a Creator God whose design for those He created involves the vulnerability that causes our utter dependence on Him and interdependence on one another. It is to be freely different, non-conformist (in the broadest and non-religious sense of the term), individual and unique in every possible way without any loss of  intrinsic value or worth. Moreover, this human vulnerability and dependence are not aspects of the so-called corruption of our original humanness, the impact of the downward journey from what we were created to be. Crucially, the creation story tells us that when God spoke His creation into being He judged all of it to be good except for one aspect – the aloneness of the first human being. Isolation, selfsufficiency and independence were not part of the original design. This is reinforced by Jesus’ life on earth in which He demonstrated that even being God did not remove his need of God and of other people. Jesus experienced vulnerability, fragility and weakness as part of the perfect human condition. These aspects of our humanity are what draw us to God and to one another and so enable us to become in reality what we are by design.

By refusing to wear our masks, they expose our meaningless attempts to impress God and others by what we are and can achieve in ourselves.

The embodied message of Rebecca and those with whom she shares the label, “profoundly intellectually disabled,” is clear and reminds us of what are often uncomfortable truths about ourselves. In her way of being she speaks powerfully of our self-seeking relationships, saying, “You choose whom to love on the basis of the love or admiration they might be willing to give to you. In disobedience to the words of Christ, you welcome into your homes people who will invite you back – all this in a search for what you think is the priceless jewel of being accepted, liked, loved. You believe words to be the key to communicating with one anothe  when often they are simply bricks in the barriers behind which you hide who you really are. How often do you say what you really mean or really mean what you say? How often are churches places where you use words to pretend to one another that inside you are sorted when you know you are broken?”

People like Rebecca speak through their conscious or subconscious refusal to conform to the social barriers that make revealing our neediness and our intensely human desire to be in relationship with one another unacceptable. By refusing to wear our masks, they expose our meaningless attempts to impress God and others by what we are and can achieve in ourselves.

Even without words, they have found a way to say, “I need you” and they are willing to share it with us, who so often use our vast vocabularies to conceal from each other what is most profoundly true of us. Again Rebecca’s life says, “When I need people to show me love, I reach out to them. When my autism makes it hard for me to accept your embrace, I withdraw and so you can be clear about that too. My needs are “complex” as your words describe them. Aren’t yours complex too? Perhaps the difference between you and me is that I don’t hide my complexity from you or from myself, as you often do.”

This, often disturbing openness on Rebecca’s part, makes us wonder whether how she behaves might be a reflection of the freedom and abundance promised by Jesus (which society ironically assumes her to be unable to experience because of the limitations of her mind and body). Rebecca does not discriminate between those she thinksmight give her something that proves her worth and those who might not give her affirmation. It’s not that she doesn’t recognise love when it is offered; she just doesn’t manipulate people to feed her need of it. She doesn’t compare herself with others or criticise them. She accepts her own neediness and opens herself to the gift of support and care from others without embarrassment or loss of selfesteem.

Perhaps it is this truth that Rebecca most shares with us – that we are all limited in what we are and can achieve and that undue reliance on our own abilities, intellectual or otherwise, serves only to drive us away from the Source of life and truth.

Just as Jesus tells us that unless we receive God with simple faith like the way a little child receives her parents’ love without ever dreaming of questioning it, so in the irintellectual disability, people like Rebecca speak to us of things that are so precious, so mysterious and so profound that we are liable to miss them if we rely, as we so often do, on the workings of our rational minds to reveal to us all that is true. They challenge the over-intellectualising and over-wordiness of our faith that can cause us to forget that words are merely signposts to the reality to which they refer. Remember, God’s ultimate Word was not a word at all – He was a flesh and blood, relational human being who gave that flesh and blood to tell us in a way too amazing for any words to describe, the most profound message that God has to share – that He loves each of us more than we dare ever imagine.

WORDS Jill Harshaw

Leader, Comunity Life Team & Lecturer in Practical Theology Belfast Bible College