Down but not out

I am a mother of three daughters. My youngest, Martha, who is 27, was born with Down syndrome. She is single and lives with two hopes: to meet her soul mate, sooner than later, and to raise a family. Her excellent housekeeping and baby-minding skills come in handy for her older sisters who are now married with children. The little pocket money so earned helps top up credit in her ever-busy cell phone.

When her sisters moved out Martha courageously picked up the challenge of dealing with the space so created. She went about her daily chores with such determination that she quickly established her own position in the family. We watched with joy and satisfaction as her confidence and independence blossomed to new levels.

Today Martha fills the house with beautiful music from her piano. Our power blackouts are gloriously lit by strong renditions of the Christian anthem "Send the light, send the light!" And sometimes the power man responds. In the maze of gospel, jazz, pop, classical and all kinds of music, Martha is a good guide and she shares generously her love of musicals with the entire family. She dances with passion and is a natural at mime, and in her free time she surrounds herself with good drama and movies.

Martha had her life fairly well in control until recently when she lost partial vision due to advanced keratoconus. To confound the situation, a recurring arthritis attack intensified. The trauma resulting from all this dealt a big blow to her independent functioning. However, the prospect of a cornea transplant operation is rallying her spirits round. The arthritis is also under control from a combination of nutrition supplements, controlled diet, and some physiotherapy. In tune with her biblical namesake, Martha also calls on Jesus regularly to personally intervene in these multiple afflictions. A keen member of the church, she takes her spiritual life seriously, though the congregation is in need of urgent disability sensitization.

Still a youth despite exclusion from youth

By the fact of her age, Martha should now be bonding with the wider fraternity of youth. But her impairment and the other youth's negative attitude towards disability combine to deny her this access. Despite this she keeps abreast of current affairs by watching news on the television, reading newspapers, and exchanging stories with friends. She is well prepared for the next General Election with her choice of leaders firmly in place.

She is good at organizing and has an excellent memory. While still a student she assisted in our studio/office with the operation of the fixed phone and in opening all the emails. She sorted out, listed, and filed all the documents efficiently. Always on hand for any odd jobs requiring simple delivery, she kept the studio well supplied with cups of tea.

Like many of her peers, Martha has been waiting for the last four years for any openings in the job market. But the real truth is, unlike others, she is not even in the official data bank for labour resource. There is therefore an urgent need to address this anomaly to remove official exclusion from the labour market.

A star is born

Martha's birth, though induced, caused no more stir than the usual excitement that accompanies a new baby. And she was a beautiful one. The doctor in attendance, an expert on newly born babies, was silent on the presence of impairment. He dismissed queries like the baby's heavy sleeping and rough skin on hands and feet as common traits with some newborns. For her poor feeding he did refer the baby to a pediatrician.

The latter treated her for bronchitis and also diagnosed Down syndrome. He broached the subject sensitively, worried about my reaction. But I had already detected Martha's difference from her siblings. He was clever and diplomatic, stating that the profession knew little about Down syndrome. Dealing with impairments in children, he claimed, was a joint parent/doctor affair with the former having the upper hand. A dual pact was sealed there and then and today he is one of Martha's very good friends. He confessed years later to having used Martha's example to encourage new parents of children with Down syndrome.

Shared parenting

So Martha nestled into her slot just like her older siblings to receive her nurturing according to her individual needs. But those needs turned out more than ordinary. For a start most of her first three months were spent in deep sleep. This called for persistent plodding to keep her awake long enough to feed and play. It was not an easy task but everyone in the family picked up the challenge. Each would take a turn to nudge a limb or a muscle, or gently wriggle a joint while talking to her all the time. It also meant exploring widely to find means of triggering a reluctant brain. Music, drama, books, and toys took on an unprecedented value in the house. Environments went under close scrutiny for their security status and resourcefulness. Her older siblings were exceptionally creative in this process that we now know as intervention.

On the whole Martha's childhood became an exciting learning experience for the whole family into new knowledge and wisdom. We fathomed depths of such virtues as peace, love, patience, and tolerance. Solemn stuff! But with Martha's sense of humour lighting the way it was a beautiful journey.

This act of inclusion of Martha into our lives was a natural and spontaneous process. By making her interests paramount it meant reassessing all our social interactions. The gauge was simple: Martha's ease with each situation as it came along. This resulted in exclusion for the family from quite a number of social activities. While the community acknowledged impairment it could not handle the resulting disability. We chose to live proactively with disability.

A time to choose

For myself as the prime caregiver, the choice was a direct blow to my individual freedom and independence. A life of choices and opportunities was fast receding into the void. In its place a single option was gradually unfolding before me. This had not been in the design of my life and my future. My publishing career was at its prime so I had to turn down some good offers. My college education potential to even higher levels of advancement lay untapped.

Yet here I was, reduced to this one choice; to facilitate for Martha's needs so that she may receive her due in life. Conditioned as I am by Christian beliefs, this pressure manifested itself as a Macedonian call. Failure to heed it would surely result in a Jonah-like consequence. I had no wish to be swallowed up and be spat out on some strange land by a divine fish. So I complied. My daughter's impairment became my disability and we both found ourselves surrounded by handicaps (see Nussbaum).

Overnight my personal life ceased. My extended family, friends, and neighbours became strangers requiring constant sensitization to help them relate to Martha. This was going against the grain. Surely by the understood social contract I was owed support? My young family still needed my continued support as they worked on their personal aspirations. Happily for me they continued to be my strongest and most loyal resource base.

But Martha soon showed that her disability was not a liability. She revealed a powerful personality with an immense capacity for love, care, and endurance. She had a gift for peace making and often diffused tense domestic situations by saying something simple. Inevitably the whole family became deeply involved in searching for more information about the nature of Down syndrome. This led into realms of knowledge about life that would have otherwise remained silent. It was like God was working his purpose out through Martha — "His wonders to perform." May His glory be spread to more people because of Martha!

No room in the ark

Exclusion from community was automatic exclusion from its institutions. At the required age of six years and even with pre-school preparation, Martha could not get admission into the majority of schools. A letter from a special needs assessment centre recommending her for mainstreaming acted more as a deterrent than an asset. A few segregated and poorly equipped centres were the only options for children with special needs. But we had taken a stand for inclusion as a way of life for Martha. So we searched for any ordinary school that would consider her case. We found it in our neighbourhood.

It was new and hungry for names to fill the register. The proprietor, a retired city education officer, was not new to learning difficulties. He had already enrolled a few such cases in the school. However, he had not worked out how to mediate for their needs. So to provide for some personal support, Martha's older sister moved from her highly rated school to join her. But she lacked tutorial support, so Martha made little academic progress. However, her social development received a powerful positive shot from her peers. It was a good experience too for her schoolmates to interact with her and the other student with special needs. This experience is denied the majority of the school population by our current exclusive education system.

It is of interest to note that the Kenya Institute of Special Education (KISE) had just recently moved to our neighbourhood. Seizing the moment, I suggested to Martha's school and KISE that they join forces and pilot an inclusion programme. The idea became a cropper when the two principal players disagreed on whose qualification was superior. In place of it the school allowed me to work with her daily for two hours. To create as little disruption as possible I did this between end of school break and before lunch. During this time we focused on a varied curriculum of literacy and numeric skills, language and communication, and life skills.

This worked well for four years after which Martha's elder sister had to proceed to secondary school. She had done well both in her academic studies and in her mission of supporting her sister. Her experience in special needs had also come in handy for the other students at the school. But the school had not made any adjustments to cater for special needs students. So Martha had to move on too. And happily for us, a school experimenting with mixed ability students opened its doors in the same year in the neighbourhood. Once more Martha joined the first batch of its students.

Augustana was owned and run by professionals in special education. Its stated aim was to motivate each child so as to enhance individual potential and aspiration. They had in place an individual education programme (IEP) together with an individual support programme (ISP). It made for an ideal environment for children with special needs. So naturally Martha found her notch here and made very good progress all round. It was also a good break for me. I could now take a back seat and reflect on life and the next stage.

This came when Martha was 16 years of age. She was ready for a more holistic curriculum combining academic learning with application of "living skills" — as opposed to "life skills." In addition the rapidly rising school costs were a big strain on the family finances. Once again there were no ready options for a teenager with Down syndrome.

Going it alone

By now I knew enough about the field of special needs to appreciate the scarcity of opportunities. I did not waste time searching. I launched a home-based boarding programme with six girls and three boys. The mission was simple: to provide a wholesome and safe environment for these vulnerable youths whose mental age needed time to catch up. The objective was to equip them with basic survival skills in such areas as Independent Functioning, Academics, and Social Interaction. The goal was to send them out somewhat empowered to fit into any vocational openings.

It was tough. Parents paid their dues after clearing those of other siblings first. The lean environment, however, became an incentive to creative learning. We learnt for real the meaning of sharing and self-sacrifice. Self-service meant pushing our abilities to higher levels, thus naturally triggering independent functioning. We engaged in academics at our own pace and for the joy of learning as opposed to passing exams. Social interaction between us was relaxed and normal. Beyond our boundaries we learnt to close ranks and advance as one integrated unit.

Child bearer and spouse

I grew up in a social environment where a woman's most important role was to get married and bear and raise many strong children. Boys would reinforce the family and community's backbone while girls were a source of wealth as dowries. Both also supplied the family with free labour. Special celebrations therefore marked each baby's arrival. To this end the girl child was intensely coached and counseled. It was also made clear that children with impairment were not expected, accepted, or embraced.

A baby born with impairment was announced as stillborn. The birth attendant left no doubt about this fact. Any who escaped the midwife's noose lived to become their mother's toughest challenge. The only welcome awaiting such a baby was a curiosity and gawking at the misfortune visited upon the mother. Sometimes too the father would disown the child, leaving the mother as the sole guardian of the right of the child to life.

She was unequipped to deal with the baby's impairment. And yet she was constantly encouraged to deny the baby any care. She had to live with accusations of being lazy, defiant, and jeopardizing the family economic base. Her husband felt robbed of the specialized attention to which he alone was entitled. By acting against all advice she broke the social contract for community support in parenting. Thus she stood or fell alone, and her child's exclusion process had just begun.

Family caregiver

And the newborn was only a small part of her load. She had to tend to all the needs of her family. Top of the agenda was food production, from growing it to putting it on the table and assisting those who are unable to actually feed themselves. She built the shelter, furnished it, and provided clean drinking water. She clothed the family and treated minor ailments. She was responsible for setting up a clean and safe environment around the home and interacting with the neighbours on behalf of the family. She was everything and this is just a mere sketch of the true environment upon which a child with impairments landed. As they say: KUNGU MAITU NA HUNYU WAKE-I! (Hail to mother and her rough skin! We'll always love you).

A child of two worlds

Even with this social milieu surrounding us, our parents went ahead to bring us up to believe in freedom, equality, and independence. We were encouraged to decide how to deal with our domestic and academic tasks. Issues between us were to be settled without violence an option. Our mother's tight schedule, in whose domain our supervision fell, could spare little time for protracted negotiations. Her space was hedged in by the traditional code for caregivers. This made for as difficult terrain to navigate as that of any disability in modern society.

We were a family of four boys and four girls. Three boys came first and one followed after me. This balanced gender mix must have been a factor to my parents' peaceful marriage. Unfortunately, my youngest sister died of sickness in childhood, as many children did in the chaos of the Mau Mau Emergency period. Both my parents were teachers and church leaders. My father died in 2005 at the age of over 100 years but my mother lives patiently, waiting, she says, to join him.

A strong believer in equality for women, my father strived to create equal opportunity for each one of us to access knowledge and experience. He personally monitored individual development by allocating chores that were sensitive to gender and ability. A committed educationist, he worked as a teacher for 42 years. His strong belief in education as the key to personal development took him to peoples' homes in search of school age children. He took them all in: girls and boys, poor and rich, and those with special needs. He nurtured them all and attended to their individual needs. He was baffled by the refusal by teachers to teach Martha. To him inclusion and schooling were synonymous.

The experience of colonialism resulted in a confused muddle of values about life. Some parents figured the way forward was to let the children be independent enough to explore the changing times. As someone once said, "childrens'souls dwell in the house of tomorrow, which you cannot visit." It was no doubt their hope that true independence went hand in hand with responsibility.