"Woman plus..." Tatyana and "Tanyusha"

Tatyana and "Tanyusha"

by Julia Kachalova



When Jesus was asked, "What is the life purpose of all these diseased, feeble and crippled people?", he answered: "They are here as an opportunity for those who are healthy and strong to manifest their humanity towards them."

Tatyana Semenova is a tiny young woman of that rare kind who win your trust from the very second you meet them. The smile seems to never leave her face, so she looks absolutely happy with her life, and you only have to wonder about the source of her serene and peaceful joy. Few people know what her actual life experience was like.

Tatyana:

"Fourteenth of September 1993 is the first day of that continuous 'durability test' which my life is. On that day my husband was hospitalized with severe spinal trauma which caused spinal cord disruption. At the operating room door, the neurosurgeon told me: 'Even if he survives, he is going to need a wheelchair for the rest of his life. You are so young. I am sure you'll find you someone else. Believe me, he is too bad for you to endure it for long. Such cases are for old mothers to take care of, not for young wives."

Tatyana and Alexander

Tatyana's husband Alexander was a military aircraft navigator pilot. His service in air forces was associated with many risks - and he managed them brilliantly. His evil fate awaited him down on earth, as if to catch him unprepared: he stumbled at the top of the stares and broke his spine. Surgeon's prognosis for his health outcome was exact: legs irreversibly paralyzed and a wheelchair for the rest of his life.
The post-operation period was an endless nightmare for Tatyana. Complete self-denial was required for her to serve all at once as a sitter, a doctor, a nurse and a psychologist to her Sasha. Day after day, week after week, year after year, she would know neither sleep nor rest, she would not give in to her own exhausted body and mind, for she knew that she had to do it: help the one she loved and support him in his trouble. Sometimes she would find herself in doubt about her own willingness to keep on living - and she rejected the thought at once: she had to live for the sake of her husband and their little son.
Tatyana:
"We had to collect literature with the advice of how to survive in such a situation piece by piece. By the way, do you know what is the public health system's understanding of the term, 'rehabilitation'? Prescribing free drugs is all they offer. We had to visit and revisit dozens of offices just to collect all the documents required to prove Sasha's entitlement to receive a wheelchair at government expense. It is the other means of rehabilitation available from the public health system. Well, the government would not pay for a wheelchair anyway, though it is over five years now since the day Sasha was immobilized.
Finally, we had to solicit a hearing at the Military Airforce Transportation Headquarters. The head officer was very nice and ordered that two wheelchairs be paid for and we be given an apartment in Tver."
When after the three-year active rehabilitation period it became finally clear that no 'miracle' was going to happen, all their efforts were redirected to make Sasha's 'new' wheelchair life as comfortable as possible.
Tatyana:
"Have you ever thought why incapacitated persons in wheelchairs are so rare in the street? They simply cannot go out on their own. Sometimes close relatives or friends would help them out of the house, but the procedure of 'carrying the body out' is so torturous both physically and mentally, that having experienced it once or twice, the disabled will give up further attempts and prefer voluntary home imprisonment as the least of two evils. Well, that was not the choice of ours."
The Semenovs were granted a flat in a standard five-story building with no elevator in it. For an incapacitated person to be able get out of it in a wheelchair, it would take to construct some sort of lift and a wheelchair slant first. Tatyana and Sasha collected all necessary data, projected the elevator design, calculated the construction budget, obtained all the approvals necessary... The last thing to do was finding money to pay for it. So they turned to Ne Day Bog (God Save You) newspaper, and journalists helped them raise necessary funds. Sometimes, all it takes is to ask for benevolent assistance.
As time went by, the Semenov's apartment was more and more adjusted to the needs of a person unable to walk around: all necessary installations were made for Sasha to serve himself; physical training devices were purchased, and now Sasha is busy with exercises for 5 hours daily. Looking at his strong handsome trunk, you would not think of him as a 'handicapped'. All this is Tatyana's creation. Tatyana's colleague: "Alexander, and Volodya, her son, and their cosy apartment, and the personal elevator, and all these pieces of equipment, - all these things are here with Tatyana's creativity and efforts. You wouldn't guess how many 'manly' tasks she managed to accomplish! I, personally, wouldn't understand that without any practical input on behalf of relatives and friends she not only manages to keep going with this incredible burden, but does it with dignity, good humor, this wonderful feeling of independence and attractiveness in her, and, most of all, without a trace of reproach to the world for the sort of life it has for her."
On having moved to Tver, the Semenovs actively engaged in their new community life and founded a local association of wheelchair-bound persons with disabilities. Instead of speculating on their trouble and seek more privileges for themselves (which is the major preoccupation of many disabled), Tatyana and Alexander offer support to those who are short of spirit to manage their troubles on their own and thus 'bury themselves alive'.
Tatyana:
The worst thing on earth is for a person to feel lonely and needless with no-one to turn to and no place for him in this world! My husband and I, we have been through it, and we want to help other persons bound to their wheelchairs to roll out of their caves. This was the underlying idea for the Tver Regional Public Association of Immobilized Military Retirees. As its initiator and chairman, Sasha had the right to choose the name for the Association, and he called it 'Tanyusha', after his wife.
'Tanyusha' is only two-year old, but it is already widely known and discussed in public and press - both in Russia and abroad. The unique feature of the Association is that its leaders have personal knowledge of the scope of problems faced by the handicapped in their daily life. Alexander and Tatyana understand far too well the broad society's profound disregard of those its members who had the misfortune to become partially immobilized: having cowardly limited their living space with impenetrable walls of indifference, it does its best to hold them within these limitations. The Semenovs' goal is to broaden this living space with any legal means available.
Tatyana:
"First of all, we listed all the community buildings without wheelchair access and required that the Tver City Duma address this problem. After several hearings, public representatives agreed that the problem must be resolved and on December 2, 1997, the City Duma passed the Social and Industrial Facilities Adjustment to Guarantee Disabled Access Act.
Not waiting for budget allocations, we found a contractor who agreed to build wheelchair slants at the Social Workers Hall, the place where all public meetings of Tver veterans and disabled are held. The next object was a new food store of Volzhsky Pekar, Inc. We discussed the problem with the CEO, and he arranged for construction of a wheelchair slant at the store entrance...
We are a non-profit charitable organization and fund-raising is the only source of income for us. Every time we manage to accrue enough for another wheelchair or some piece of equipment badly needed by our members, we feel as if we have won another local battle.
So far, we managed to provide two young men with active wheelchairs of the new type: light, easy-to-manipulate, swift. After some training, including lessons of climbing stairs on their new wheels, these guys were able to wholly enjoy new dimensions of independence. One of them has started his own business. And the other one takes of life what he can: goes to the circus and other shows. We are happy with the feeling that we have given both of them an opportunity to choose his new life-style."
Alexander applies his knowledge of engineering to improve the construction of wheelchairs manufactured by both Russian and foreign companies, and calculate optimum angles for wheelchair slants. And Tatyana promotes his ideas and solutions through the offices of decision-makers who are responsible for her husband's plans implementation. To her own surprise, many of them are implemented!
Tatyana:
"The entire 'military' block where we live was built by the Germans in exchange for our troops withdrawal. By now, we managed to insist that all the buildings be equipped with railed slants and sidewalks - with stepless curbs, thus making our neighborhood friendly not only to veterans in wheelchairs, but also to mothers with baby carriages and the elderly. In a civilized world, such details are natural; and we have to keep inventing the bicycle over and over again."
In the end of 1997, 'Tanyusha' Association held the first meeting of Tver citizens in wheelchairs. For many participants it was literally the new birth. After years of seclusion, they discovered that the outer world was not so hostile and restrictive to them after all.
Keeping in mind all the difficulties they had to overcome to access necessary information, the Semenovs do their best to share information with every member of their organization. In particular, they forced the regional social security agency into covering the cost of annual subscription for the Nadezhda (Hope) national paper for the disabled, as a part of the government social benefits plan.
E. K. Matveyeva, Sector Manager of Tver Oblast Social Assistance Fund, shares her opinion of "Tanyusha" activities: "I wouldn't say that Tver oblast public agencies' professionals do nothing to support the disabled in their needs. Some funding is always available to implement the regional program of their social rehabilitation. However, "Tanyusha" is the unique initiative, and sometimes I have to admit that they are more effective in providing help to the disabled than government benefit plans are."
Tatyana:
"I never feel uneasy with an incapacitated person. I feel as if I personally went all the way through it, step by step, together with my husband. And I know exactly when they are want your assistance and when they want to be left alone; when they want you to offer it and when they want you to just do it and keep silent... Have you heard of how aids are trained, so they could understand what a person in wheelchair may need? The best method is to put them in a chair for 24-hours to make them learn what it is like. Well, I am bound to a wheelchair for five years now."
Colleagues appreciate Tatyana Semenova as a social worker of the new generation who incorporates qualities of a client-friendly practitioner, a case manager, and a social-aid volunteer. She is the carrier of first-rate professional knowledge and skills in all these areas, and still she is eager to learn more: she is the frequent participant of workshops for non-profit public organizations; she applied and qualified for international accreditation as a social services provider, and so forth. In her new profession, Tatyana is prominent among her peer social workers with her stable immunity to bureaucratic ways and continuous search for new alternative options to provide social services to her clients in an integrated and comprehensive manner.
To conclude, I would like to complete the portrait of this outstanding woman by quoting one of Tatyana's colleagues: "I believe creative persons of her kind to be the only hope for this society to regain some moral ideals. With her life example, Tatyana lays down clear evidence of inexhaustible reserve of human spirit and the perfect power of love before all these people disappointed with life and uncertain about their power to change it."