Any and you are in the stream home edition a welcome to my dining room table now today we are talking about people with disabilities and the impact that the coronavirus is having on them i have an excellent lineup of guests and im going to get them to introduce themselves that. I am sometimes director of disability rights and Human Rights Watch. Good to have you in the stream. All right. Disability rights. Campaigner and a sports activist. All right looking for a t. V. Bringing your expertise to our conversation and hello dr kim. Hi im merely jackson moanin osteopathic position and a disability rights advocate and activists with the colorado cross the Ability Coalition or 3rd pronouns or she and her. Get to have a delta camp set as always has the stream ryall an interactive called the say she knew can be in the conversation as well. Thank you very much for being here you can comment you can have questions you can push back what are your stories please send them to us in at that and also if you will on twitter at a. J. Stream is how to get in touch with us let me start with a tweet from the United Nations enable group and they say on twitter because it 1000 pandemic comes with particular challenges for the most fun ripple including people with disabilities check the w. H. O. Tapes on how to ensure everyone sees the care they need in the current virus pandemic and as a graphic and it talks about physical barriers to access hunting facilities the need to touch things you have to touch that difficulty in electing social distancing and difficulty accessing in summation say that boiling it down not only is the current virus difficult for everybody but particularly if you have to supply delta came signal perspective can you give an example of where someone with disabilities the new experience is going to be struggling right now in this pandemic. Well for those of us with more severe disabilities we often need help from care providers who come into our own most of us have multiple care providers who may or may not work with other clients and so its something weve been struggling about its here in the us and i understand around the world theres a shortage of personal protective equipment to keep our. Characters in state and to keep our feet. People with disabilities and so i think thats something weve really been trying to figure out solutions for im sure youd see. Many countries people have been working on quite. Cover the face and protect the spread of the virus and we also talked about things like using even trash bag to cover your quote so that you dont carry the virus around on your quote or having a separate set of quote that you wash it you can and new change when you get to the person and then we are able to watch the quote their weight but of course all that create unique challenges well because. Some of those resources arent available its not easy for people of this ability to get access to some of those who are not just coming up with the plan well this is not stuff thats really meant to be doing that there are protected can we be and how can we achieve that with what we have and what you know about. And im looking at a piece of a quite recent rate. I get a chance of bringing in as good as somebody at a job they know i just dont get it. I think you raise a good point dr kim i think that thats for people who have caregivers who are still coming at home and then theres of course people who because of the quarantines this situation the caregivers are no longer able to come and you know people who need help for daily things that we all take for granted eating meals or taking showers and even more challenges and in really doing those. Basic those basic tasks and i think thats where you know the situation is even more complicated for people with disabilities and i was saying a little bit earlier that theres a piece that you wrote particularly as from your perspective as a paralympian but i know that you will focus your concern is about people with mental disabilities all well but also when to challenges as well can you explain that piece why did you write that. Enough to start let me start by saying that he said what people ive been excluded from most governments and i can see planning and because of that act i think that my digestion is is just sort of like taken a different scales altogether and that plays a lot on peoples Mental Wellbeing you know i knew my doing being disabled and having to rely on a caregiver for example you know on having to rely on certain facilities in the community that house you leave sort of a normal life and then suddenly the government says you know they announced and him i didnt see a lockdown for example you know a day and announce that you cannot just go to the supermarket and then you realize you know like when dr kim say that suddenly you have some outreach event you know by someone who is coming to you not to give you that can that cause i sort of just realise that Mental Wellbeing is why towards us together you know as i you know as apostles and since all of this began after i saw many emails and Text Messages from people we different challenges are different obstacles telling me that. Their Mental Health is really is trying to in oh theres one person whos you know who suffers from anxiety and despite some told me that you know and every time i switch on the news and they talk about statistics of how many people have died despite sonys thinking should i just commit suicide because his anxiety has gone really high you know theres another one who is sort of like really strong as we. Keep cleaning and you know washing their hands but when the media is so sort of wash your hands 20 times and all back new found has south cleaning the walls of hamas. I think we you know you know we have getting all these good messages going out and telling us how we are we should not solve these hygiene and stuff like that but then we also need to realize that theyre all you know theres a group of people who are struggling more from from everything. You know and and thats why i wrote back piece i said how do we learn to control our have our Mental Health on mental am have our own Mental Health and you know well being this particular time you talk like mining Different Things and just sort of like in london to really think of number one and number one is yourself behind those closed doors what is happening right how are you im going to appoint how are you. And i did i just want to just jump in just a little bit because you tube is talking to you as well to do i guess is a thanks for being part of the show today who will and why i see say is yes the disability a regime people often talk about the elderly and the vulnerable so vague but not always disabled and or clinically ill its not new but its frightening it almost feels like shams is that the prejudices that already out there and by this pandemic whats your experience been shatha. Id agree it weve heard a lot about the situation in Nursing Homes and its staggering the number of deaths that are taking place but one of the most invisible groups at least from my experience is the were going to mean rights watch as people who are living behind these closed. Doors these institutions Mental Health facilities where you really no one is know no one really knows whats going on and these are hundreds of people who are living in many countries and unsanitary conditions laying on the dirty floor dont have clothes on or very raggedy clothes who dont have access to nutritious food and in some cases in many countries we even found people who were chained because they had Mental Health conditions and these kind of circumstances you can just imagine if the komen pandemic reaches these institutions. Just what kind of devastation will happen there and yet theyre invisible and what we hope to do in along with a lot of our partners is make sure that were telling their stories and making sure that a cogent response doesnt exclude them. You know shannon i you know i really i dont i dont think you know i do i just and i get says made up in comes in 2nd i just feel like champagne is really talking about you know about africa are you not and especially if i may speak of east africa because im originally from kenya and you know can give us and you know are unable to keep that social distance and because they have to carry on assisting you know peasants living with disabilities but at the same time they have the breadwinner as they have to go out in the community and go and do the small jobs they do so that they can bring food back you know at home and when you talk about that could be possible Protection Equipment that isnt how do of its not in the vocabulary of any passed on in east africa at the moment and that is where am i see at ease you know what is really going to happen when this pandemic heats this developing nations. And even here in the us. Here in the u. S. And a lot of Skilled Nursing facilities are Nursing Homes we talk about older people that are living in the Nursing Homes but again the invisible population is there a lot to younger people even with disabilities that are nursing some of my friends grew up in children and Nursing Homes and only were able to get out with the assistance of a lot of programs that weve started to work to establish here in the u. S. And the problem with that is that being an invisible population they are just as much if not more so at risk than the rest of us with disabilities with kobe as and with saying about especially nursing assistants here in the u. S. They often have to work at multiple Nursing Homes because their pay is significantly lower than a lot of the other people they are staff that work in the Nursing Homes and they dont arent they dont have their personal protective equipment to use to keep them and their patients safe and i actually just went to a web in on friday and we talked a little bit just about online and how were all learning to be more online. This is an online webinars i went to and they said one of the biggest Infection Control problems was simply hand washing and that really nursing assistant stack they have 8 or 9 patients that they have to see they may all be trying to get showered it want and so its really hard to wash your hands between each patient and so a lot of these Nursing Homes have become huge incubators of coded with very large numbers of deaths because there are unsanitary conditions there are unsafe conditions and so i think we weve worked a lot so that we dont have the level of abuse that they havent some places and certainly i mean Nursing Homes are better than others but we still have a lot of these problems here and theyre not talked about in terms of disability theyre talked about in terms of older adults. Yes im a lawyer i would tell you that brewing. Is going to bring in another comment here come right back. And ayla brunis an author and on twitter she was discussing disability in the car in a virus with us she says im in a wheelchair i dont drive my housemate has severe visual impairment and can easily tell if shes keeping social distance my m. P. Told me to go to a local charity but food parcels dont cater for dietary needs and it was such an important conversation that we actually then called her up and asked her to explain a little bit more the u. K. Government is neglecting its disabled people with the vulnerable less that is given to the supermarket its ignoring those of us with mobility issues who are autistic and you have other issues that think it should be expanded to meet the needs of all disabled people with a need not just those with susceptibility to the virus there are those of us who cant get out and who dont have support who need it and not with finding in this situation is that all of the provisions are being made for lock downs all around the world theyre not you see thinking about people with disabilities go ahead. I know exactly where i was going to make a similar point when weve done work on the situation for refugees in many countries and weve actually looked at the situation for refugees with disabilities now you can just imagine how difficult it is to do social distancing and keep your hands clean and have hand washing in refugee camps but when you add a layer that youre a person with a disability i mean one of our close partners is an amazing young woman named eugene moustapha shes. From syria and she traveled all the way from syria to germany in her wheelchair a few years ago and she. Had been working with asked and tell the story of the situation of refugees with disabilities she told us how when she was a refugee in greece she wasnt even able to wash her hands at the tap and thats in a normal circumstance let alone now because the tap was too high for someone in a wheelchair to reach and then. Weve heard stories from there and in other conflicts in africa in the middle east where people with physical disabilities in particular are literally crawling into the toilets because the toilets are not accessible and so when you when you think about the health risks that are associated now you add code on top of that mean its an impossible situation where in many cases people with disabilities have been overlooked. Yeah theres the center you are you are you dont really write you know i give you an example of what is happening in kenya you know this there is increasing in violence at the moment and you know this is a posture that has been rolled out and that the whole of kenya i think the problem is the police dont know how to enforce us years on people with disabilities so theyre actually mishandling on really really treating these episodes with disability homes so bad ways and im sort of just wondering when them you know like the human and the Human Rights Watch youre going to be looking at these because its terrible for example and when our own man we decided to was found outside and you know outside our house and sending some you know some you know some stuff and the point is me instead of helping this woman they took everything that she was sending and part of the on of the house you know the women are being grant that women are being. You know i mean people are stealing from from this women. It just really breaks my heart and im sort of wondering is there while watching everybody is talking about on the 19 and now its affecting the elderly you know that nobody is really talking about how its affecting their december people you want to believe in that here in the u. K. Many people with disabilities are so afraid of what will happen to them when we when they go to hospitals because. We know that the rule of the task now you know what was wrong about 2 weeks ago is that if ostomy with a disability contracts on a virus on cost of the hospital that doctor has a choice on whether the eval body possum who looks healthy and strong should be given priority getting the specialist treatment and. Not and if i want you to find a way for example and if i make i want to show i want to illustrate this a little bit where is it with a letter that has been circulated and it has basically been very frank and it says that you know this is a very hard letter to write to you but it also says people with these conditions are also unlikely to be offered hospital admission these are conditions conditions disability. Yes that has made michigan should they become unwell and certainly will not be offered as then too late to bed so hes basically having a hierarchy of who is worth your treatment who is not was the treatment dr kim is quite shocking that this hierarchy should come from the medical profession itself can you explain to us why thats happening. Yes and i would actually say that if you know what. Tradition can be like and what it can be like to be a physician its actually not that shocking. But is that i was looking at they did a survey of emergency or providers and 18 percent said they would be glad to be alive after final cord injury but when you actually interviewed a spinal cord injury survivors 92 percent report i quality white and when i was in medical school we had an end of life class where were talking about end of life option and the general can come to many of my choir not myself and this was before i even had the disability bill and now they would rather be dead than in a wheelchair or they would rather be dead than have to pay for their of their life to help with nutrition and. Irony 2 is that i ended up both in a wheelchair and i have feeding tube and i need help with my nutrition and beauty and all of that but what im trying to say is just that as providers many providers be old that disability is the end of your life your life is over there is no good that can come out of it and so that been get translated to well this person has a difficulty they must be nodes or goal so why should they get care anyway because theyre like really not that meaningful and when you talk to meno realty of god not at all were very happy to be alive and were very happy to continue to live our lives even though we have very unique challenges that we have to learn to navigate these 2 as i can really get a client to pop to bringing guesses do excuse me for one second to bring in a very well known american disability activist court alice wang and alice one feels a lot of these strategies to be made in these provisions that have the mate doing lockdowns and the current virus strategies for the communities around the well had been done without disabled people because they havent been thinking about disabled people these get their chance to study trying release it get your treatment through shutdown. Sandri of city center steinberger archers such as. Order and to see her. Live as if it appears there is out there desperately. Needed as he sits there and spirits to trace county trash. Practices to get past. This it is sheer pleasure in every situation and sensitivity should get those intercepted Decision Makers to cashier is sent to nationalize people and situation he says it is. And thats the key. And im going to tell you to beat out he said to say japanese. Well exactly who havent been talking with people with disabilities i think thats the other element of thats missing is that there needs to be consultation with people with disabilities when it comes to these medical protocol when it comes to how to support them to live on their own in their or in their o