“We May Not Think As Quickly, But We Feel As Deeply” (Ros' Blog)
Two recent encounters give a painfully poignant insight into the reality of lockdown for people with significant learning disabilities. In the first, a young woman is visited by her mother for the first time in 15 weeks since the beginning of lockdown. The meeting takes place at a distance of 2 metres in the garden of the care home where the young woman lives. This woman has sufficient cognitive ability to understand that a virus is the cause of the separation, although she doesn’t fully understand why. She knows that a vaccine will get rid of the virus but can’t understand why one isn’t available today.
The conversation goes like this:
Young woman: What Mum going to get when there’s a vaccine? (And she taps her upper left arm with her right hand.)
Mother: A vaccination?
Young woman: No. What Mum going to get when there’s a vaccine? (Taps her arm again.)
Mother: A jab?
Young woman: No. What Mum going to get when there’s a vaccine? (Taps her arm again.)
Mother: I don’t know. You tell me. What’s Mum going to get when there’s a vaccine?
Young woman: (Tapping her arm again.) Close to me.
In the second scenario a father is visiting his profoundly disabled, non-verbal daughter in the garden of her care home, again for the first time in 15 weeks since the beginning of lockdown. His daughter is wheeled into the garden of the care home. As she sees her father, her face lights up in a beautiful smile, and she leans forward in her wheelchair as far as she can with her arms outstretched. He tries to explain that he isn’t allowed to give her a cuddle and has to stay two metres from her, but this is beyond her comprehension. As he fails to respond to her outstretched arms a look of confusion comes over her face and she soon begins to sign in Makaton that she wants to go to bed.
It would be impossible, I think, to overestimate how hard the separation from family has been for people with profound learning disabilities. When I was about 13, a MENCAP poster campaign had a profound impact on me and changed forever the way I viewed disabled people. The poster depicted a small boy with Down’s Syndrome who was crying, and a slightly older girl, also with Down’s Syndrome, with her arm around him, comforting him. And the caption was, “We may not think as quickly but we feel as deeply.”
Imagine feeling so deeply the separation from family, but not understanding why your parents have suddenly stopped visiting you, and not having the vocabulary to put your feelings into words. You can’t offload to those close to you because you don’t have the ability to explain to them what you are going through. Good and genuinely caring care staff will read the non-verbal communication, but not all care staff can do this, and even if they can, it does not alleviate the confusion as to why family visits have been suspended for many months. What a frightening and disorientating world it must be to inhabit.
What can churches do to help people facing such a difficult experience? Practical solutions are limited, but above all churches can pray. Pray for the confusion and fear to be overcome by the peace of God. Pray that in the absence of family, the sense of God’s very near presence will be a daily reality. God can and does answer such prayers for people with learning disabilities. But also, send cards with cheerful pictures and simple messages such as, “we haven’t forgotten you”, “we are thinking of you”, “we love you”. Chat to people over Zoom or Skype. Even very profoundly disabled people can be helped to engage with this. Wave to them over the video link and play their favourite songs. Send them presents based on their interests. Contact their families to find out more about their interests and do something relevant to that – send gifts or share pictures and videos of things that they love to see, via Zoom. Eventually when the rules permit, visit in the garden (at present this is restricted to family).
And pray that this horrible pandemic will soon be over so that families can be reunited again, which is always the will of God: “A father to the fatherless, a defender of widows, is God in his holy dwelling. God sets the lonely in families, he leads out the prisoners with singing.i”
'A Unique Voice in Lockdown' - the Summer 2020 Vital Link
The Summer 2020 Vital Link is now available! Like everyone, we've had to make a lot of adjustments to keeping working through Coronavirus pandemic, and a lot of our trips or events have had to be postponed. There's still loads of work continuing, especially with our Roofbreaker Church Inclusion project, and we're excited to tell you all about it. You can download a PDF of the Vital Link below, or please contact us for a print, large print, braille, or CD audio copy.
We've also included a link here to all of the web pages, articles, interviews and videos mentioned in this issue--to hopefully make it easier to take a look at them all.
Here's the video reflecting on a time of shielding that Fiona mentions in her front page article...
Tim was invited to join an online gathering of ‘Pray London’ to highlight the needs of disabled people at this time to a new audience for prayer (you can see Tim at 48:56 mins into the programme, here… Follow this link to watch the Pray London Video).
He also promoted Through the Roof which partnered with Your Neighbour.org who interviewed David and Carrie Grant – musicians and parents to 4 children with additional needs. Watch and listen to their insights on the ‘Leaders Lunches’ video-conference event on: Follow this link to watch the 'Leaders Lunches' Video Event.
Fiona and Ros have both had articles featured on Christian websites: Follow this link to Fiona's article in Woman Alive and Follow this link to Ros' article on disabled leaders in the Bible
You can also read the newsletter in the Joomag viewer with better controls and zooming, if you prefer. Follow this link to the Joomag site version of the Vital Link.
Relating From The Heart (Ros' Blog)
I recently had the privilege of joining a zoom conversation between a young woman and her father who are not currently able to meet up because of lockdown rules. There might seem to be nothing unusual about such a conversation, but what struck me was that this interaction was between a non-verbal woman with a very profound intellectual disability and a man of great intellect with a PhD in mathematics. The distance between their cognitive abilities could not be wider. And the interaction between them was both fascinating and heart-warming to observe.
As she turned to the computer screen and caught sight of her father, her whole face lit up in a broad smile, and I observed a look of delight on his face in response. It occurred to me how vast is the gulf, intellectually and in every other conceivable way, between us and God, and yet how great the mutual delight when we come to Him in worship.
And yet, as with the scene I was sitting and watching, maybe the gulf is not so great. This man is her father – she exists by his will, and there is a deep bond of love between them. And is this not also true of us with God? He has created us in His own image, and he has created us for relationship with him. This young woman’s disabilities are no barrier to relationship with her father; his love for her is not diminished by them, any more than God’s love for us is diminished by the disparity between His abilities and ours.
Something else struck me about the encounter, too. This young woman, non-verbal, helpless in many ways and needing almost everything done for her, revealed in her smile an immense capacity for relationship and for love. And I thought about how so many people with profound intellectual disabilities are denied the opportunity to express that, especially once their parents are no longer alive. The deep relationships which they form are with their paid carers. And as soon as the carer leaves and gets another job, the relationship is immediately terminated, often for reasons beyond the person’s comprehension, and each time it happens it leaves another wound in his or her spirit.
Maybe most church members don’t think very often about forming a deep friendship with someone whose cognitive ability is very limited. But I can think of one couple, a teacher and a lawyer, who have made a point of doing exactly that in their own church. This couple not only give a great gift of friendship to people whose main friends would otherwise be paid carers, but they also receive an enriching relationship of love and care into their own lives as a result.
I have written it many times before, but I think it bears repeating. Friendships are not brain to brain but heart to heart and spirit to spirit. An intellectual disparity is insignificant when the heart is engaged in loving. Here is a beautiful and much needed role that churches can fill, befriending those whose only friends are paid to care for them, and being a rock of stability in their lives when those paid carers move on. The world looks on them as the least, but in the Kingdom of God they are the greatest. And as Jesus said, “Inasmuch as you have done it to the least of these, you have done it to Me.” What steps could you take to building this kind of friendship with someone who needs it?