Letter from our president: 13 weeks of heart-breaking separation

Inclusion Europe president Jyrki Pinomaa writes about his experience in Finland in times of COVID-19 emergency.

Letter from our president: 13 weeks of heart-breaking separation
Jyrki Pinomaa

Inclusion Europe president Jyrki Pinomaa writes about his experience in Finland in times of COVID-19 emergency.

Exactly thirteen weeks ago, on Friday morning, March 6th, just before eight o’clock, our sons Markus and Robin were picked up by their taxi in the courtyard of our home. The regular one-night visit here at the brothers’ childhood home, which had been part of the weekly routine for many years, was over, and due to their parents’ week-long vacation trip, there would be a two-week break before the next planned visit. That same morning, Helsingin Sanomat, the main newspaper in Finland, reported that four classes in a Helsinki area school had been placed in a home quarantine because one of the school’s students had been diagnosed with a coronavirus infection. Life in Finland continued to be otherwise normal. In the early hours of Saturday morning, we boarded at Helsinki airport a Finnair plane, which flew us to Spain.

Only a week later, things were very different

The main headline of Helsingin Sanomat next Friday shouted “Everything changed in a day” across the width of two pages. News headlines in the same newspaper described the situation as saying that rye bread and toilet paper had run out of several stores, the Helsinki Stock Exchange collapsed by ten per cent, the Helsinki IFK played against JYP in an empty auditorium, the Foreign Ministry called for all travel abroad and those returning from abroad were required to comply with a two-week home quarantine after returning to Finland.

We were still on our last day in the Spanish sun, on the Atlantic coast. The return flight to Helsinki was late Saturday night. We heard local news about declaring Spain into a state of emergency and a general curfew to be declared accordingly. From home, we received information about the isolation of the brothers’ homes and the closure of their daily activities starting Monday. We set about arranging the relocation of Markus’ and Robin’s day time personal assistants to work at their homes so that even some sort of regular activity and everyday safety structure would continue. During the same day, we received approval from all parties for this arrangement. We realized our home quarantine was postponing the brothers ’next home visit. However, we then assumed it would be possible again on the Thursday of the full week after our return, when the pause from the previous time would become three instead of the planned two weeks.

The pause eventually stretched to thirteen weeks

On the Monday after our return home, the new reality that we would come to live in an indefinite period of time gradually began to unfold for us and for all other Finns. The focus was facilitated by TV’s daily afternoon live Corona broadcasts, which also included government briefings. It soon became clear that no one seemed to understand the behavior of this virus and that’s why everything seemed so uncertain. Information about the recommendations was also given as binding provisions to the people. These, moreover, were even contradicted by experts from various fields, from day to day.

In spite of otherwise some oversized virus protection measures, we had upon our arrival in Helsinki witnessed an uncontrolled gap the size of Helsinki Airport. After arriving in Finland, the passengers had been instructed by the government to comply with that two-week home quarantine. However, this was in no way reminded of either during the flight or at the airport. After arrival everyone was freely allowed to choose their own way of traveling to their quarantine, even for hours traveling by public transport across the country. This gap yawned open for nearly two weeks because none of the authorities realized it was their responsibility to block it.

On Wednesday, March 18th, in their letter, the service provider responsible for the daily help and support of the brothers approached us families, saying that: “All visits are forbidden for the time being”

The ban on visits applies to family members, the client’s personal therapists, assistants and other similar persons. We have previously instructed that our clients’ visits and vacations to relatives or acquaintances be postponed until the coronavirus epidemic has subsided and the visits are safe again. Despite this, some residents of the housing service have continued to be taken away from their homes.

Home holidays to families are forbidden! If a family, contrary to our instructions, takes our resident home for a vacation, the family is responsible for the care and upkeep of the resident themselves without additional services from the municipality or service provider. The client cannot be brought back home but is treated by the family until the coronary pandemic has subsided.”

No understanding of how difficult and complicated this situation is for both the residents and their families. No sign of compassion of any kind. No understanding of the feelings evoked by the sudden separation between residents and families. No wish to joint efforts of following these instructions. No offer or suggestion for cooperation. No expression towards the direction in which the Prime Minister, in her daily press conferences, had persevered and shown empathy “together we will find the way out from this too”.

We started exploring the possibility of keeping in touch with the brothers through the iPad we had earlier acquired for them. The device had been unused for quite some time, so the applications downloaded to it years ago first required updates. We got the iPad up and running and a Skype connection was opened. However, the images that opened through it were mostly still images, but the sound still seemed to pass. When discussing with our sons who do not speak, it was paramount that the expressions, gestures, and support signs they used would also be properly used to support the communication. Upgrading the mobile connection to make it more efficient increased the performance of the device as a videophone. Staff had to get used to using the device.

After the difficulties in the beginning, the video connection finally started working properly. During the daily video calls, the constant and unyielding message of the brothers became clear to us: “We want to go home”. Our national broadcasting company YLE announced their intention to produce the seasons last short documentary about the Skype connections between different people during the Coronavirus emergency and asked us to participate in the program as one example.

After weeks of isolation, in early May, when the service provider announced relying also on the instructions given by the local authorities, we began to read the guidelines for service providers in our own home municipality. At that time, there was also a lively debate on social media about the legality of travel bans. On Twitter, some local Disability Service Officer found home visits not to be prohibited. Similar instructions had also been sent to the service provider from our home municipality and the instructions from Social Ministry’s lawyer was; home visits cannot be denied.

Helsingin Sanomat received a hint about the total ban on visits, and on May 13th the newspaper headed “Brothers with intellectual disabilities have been kept separate from their parents since March”. Human rights lawyers were also awake, and a newspaper article mentioned that reports had been sent to the authorities about the deprivation of freedom of movement. YLE’s Spotlight program took an interest in the topic and asked us for an interview.

Close contact with the other parents of other residents showed that everyone was already on the brink of coping with this weeks-long isolation. The government gradually began to open up society after the lockdown. Schools would open in mid-May, restaurants would be expected to open from the beginning of June, and gatherings of less than fifty people would be possible.

We the families decided to write to the service provider and require them to follow the Ministry’s unambiguous instructions. The first letter was answered, repeating the old instructions. With the second attempt, we received a response that met with our expectations. Home visits were not recommended but were not either prohibited. The work of personal assistants and therapists at the residents was also made possible again.

Yesterday, we raised our flag not only to jubilate the Official Flagship Day of the Finnish Defense Forces but also to jubilate the end of thirteen weeks of isolation. We also shed some tears for the joy of seeing each other again and for the disappearance of the long-eroded anxiety of separation. This was witnessed by – taking into account safety distances – YLE’s Spotlight two-person team, which now makes a documentary of the isolation of people with disabilities during the Coronavirus emergency.

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