ShabbaTTogether at Malvern Chabad, 9th February 2019   

George Halasz 

Yet another unique Shabbat at Chabad Malvern. On this occasion we shared  the day with 100 other Jewish centres around the world, together, marking an the experience unlike any other that I have witnessed. Really unique. 

In my professional life I have attended many lectures on ‘disability’. I have heard people who speak about now disability affects their family and their own lives, what has been helpful, or not, in their journey to come to manage their conditions.  

So why was today’s event different to my previous experiences? 

This Shabbat included three speakers, Mattie Michael, Tully Zygier and Menucha Cooper, introduced by Menucha, who also later spoke. Each speaker shared intimate moments from their journey that has become turning points in their lives. 

Despite Mattie’s condition, autism, which left him with considerable communication and speech difficulties to surmount, barriers that otherwise often lead to social isolation, withdrawal from community, shunned even by family and friends, in contrast, Mattie delivered, in a moving prepared speech, how over the years, despite his disability, another design was shaping his life. 

With the love and incredible support of his family, and Chabad, where he celebrated his Bar Mitzvah over a decade ago,  he clearly enjoyed sharing his recollections of the event with Rabbi Shimshon, who responded in kind.  As I was listening, at times I thought, ‘Oh my G’d, I can’t believe this’. My reactions shifted from heart-wrenching to heart-melting moments with each speaker.

Next, Tully introduced her condition, familial dysautonomia, a genetic condition she described as having affected her ability to walk, her growth, loss of sensations, and other physical and emotional stresses. Despite the challenges, with the on-going love, encouragement and constant support from her parents, she attended mainstream schooling, advanced to university, graduated,  become an accomplished writer, and highlighted moments as she worked for disability services. With heart-felt  words she described some of her challenges, the loneliness, frustrations like being repeatedly asked ‘what is your condition?’ 

Tully’s humour and good natured advice to a questioner, ‘how should we approach you, what should we say?’ was a simple direct answer, just say ‘Hi’, and if I like you, we’ll have a chat…’ The implication was obvious, otherwise, it’s goodbye Charlie. Tully offered much wisdom, lessons learnt from what it has taken her, as a woman, to arrive at a place in life to embrace her condition and enjoy her life. 

Menucha continued from a theme she introduced earlier, likening preparation for parenthood to a preparation for a trip to Italy, you buy the guidebooks, maybe learn a few key phrases, have expectations what exotic places you would live to see and visit in the new country. Then, when she and Reuvi were told that their son, Mendy had Angelman syndrome, a complex genetic disorder that affects the nervous system resulting in severe speech impairment, delays in development and intellectual impairment, their ‘travel plans’ in parenthood were suddenly, without any warning, redirected to ‘Holland’. They were shattered, at a loss, unprepared. 

Over the last five years, Menucha highlighted the ‘gifts’ that Mendy has brought to their family, inspiration, unexpected senses of belonging, for example when Mendy’s school-mates offered the simple observation in the school newsletter, ‘Mendy loves to play with the toy giraffe’. 

How such a simple sentence can move a mother, and the audience enjoying their lavish Kiddish lunch, to tears, you had to be there. Most recently, after a course of treatment in Israel, at the world renowned Institute started by Professor Reuven Feuerstein (1921-2014), Menucha shared the  amazing results of the paradigm changing treatment that had Mendy learning to recognise colours, a breakthrough once thought impossible, now a reality. Menucha offered a special note of gratitude to Mendy’s siblings for their amazing sense of love, care and friendship towards Mendy. 

So  why was I so amazed by today’s encounter with these three amazing speakers, the word ‘awesome’, in its literal sense of ‘awe’, comes to my mind? I have yet to mention Shimshon’s speech that set the tone for this ShabbaTTogether. A speech that left us speechless. 

Shimshon outlined the familiar story of today’s Parshe Terumah, the building and commissioning of the Tabernacle in the desert, preparation for the later  Temple in Jerusalem. Shimshon reconstructed the dialogue between Moses and Bezalel, the 13-year old architect of the Tabernacle (Sanhedrin 69b).

Moses had the clear vision, Shimshon explained, and instructed Bezalel,   
as God instructed him, Moses, to make Him a Tabernacle, Ark, and vessels, but Moses reversed the order, telling Bezalel, Ark, vessels, and Tabernacle. 

As Shimshon highlighted, when we build a house, we follow a plan, usually it is the frame first, then the content, obviously. Yet, Moses, who could see the ‘Light-Vision’ of the final building did not need to frame his thinking, he saw the ‘big picture'. 

Yet, when Moses offered this revised instruction, Bezel objected, insisting that  the sequence of the building needed to be first, Tabernacle, then the Ark, and last, the vessels. Moses then said to Bezalel, ‘Were you in the shadow of God, that you know this?’ (Berachos, 55a). Shimshon noted that in fact the translation of his name, is Bezal is ‘in the shadow’ El ‘of God’ .

To push the argument further, Shimshon challenged us to define what makes a letter a ‘letter’, asking us, is it the shape of the ‘back print’,  or, if we shift our focus, is it the ‘white space’ that surrounds the print that defines the shape? This was not just an interesting or challenging question dealing with the mechanisms of visual perception. 

Rather, Shimshon went on to bring the point home; first, in the construction of the Tabernacle, some of us need to have the plan for the building, the ‘box’, the compartment as the building itself is constructed, before we can ‘see’ how the vessels within it will be arranged and contained. 

Moses had the spiritual power to see, to contain the power of the ‘Light-emanation’, he did not need to have the ‘box-frame’ built first. But in his wisdom, Moses realised that for us living ‘below’ we are overwhelmed by such ‘Light’, we need to have it contained, lest we become overwhelmed. So Bezalel, obediently, with permission from Moses, went on to the sequence, first, to construct the Tabernacle, as God initially instructed.

Second, Shimshon’s challenge for us to reconsider the ‘nature of a letter’ is it the shape of the ‘black' print, or the ‘white’ space that defines a ‘letter’?

When it comes to ‘disability', what do we focus on? We do have a choice: is it the person’s inner light, which is visible to some, even as the overpowering ‘white light’, or do we need to shy away, shield ourselves from the reality of the inner essence, do we need to contain that overwhelming power, to have a  ‘plan’, like Bezalel’s  plan, to built the Tabernacle first, do we need to know the label, what sort of disability do you have? Or can we bear to see the humanity, the sheer power of the inner Light?

Moses had a different vision. He shed his Light on the deeper Truth. To be sure, Moses did settle, in the end, on how Bezalel needed to see it.

My message I gleaned from today, from our three inspiring speakers at the  ShabbaTTogether, along with Shimshon’s introduction, is a message of disruption and challenge: my perception of disability is limited only by my own lack of courage to see the ‘bigger picture’, the inner Light.

I need to be prepared to re-focus my sight on the ‘white spaces’, the dimension of the bigger reality that Mattie, Tully and Menucha, and their families, could obviously see all too clearly.